Sunday, 29 December 2013

Thanks to YOU

This year, 2013, has been a phenomenal year for The Girl With Arthritis! In 2012 I was lucky to get a few views a day but this year my views have gone above and beyond my expectation. Iwas even given some awesome opportunities. This is all because of you reading my posts! Thanks so much for sticking with me from the beginning or just reading for the first time. Not only has my blog been more successful, but greater things have come as well. I think my favourite is getting to 'meet' and talk with new people through this and other blogs. You've gotten me through the worst of times and helped me celebrate the best of times.

And though 2013 was a great year for the blog, it was a very hard year for me. A lot happened over the course of the year in all parts of my life. Arthritis wise it was a tough year and I went through a lot between dealing with the disease itself and complications from it. I still am going through a hard time with it. Since the year is almost over, I want to thank my family (you know who you are) for helping me through. I also want to thank my two best friends in the world for sticking with me through it: I've lost many friends because of Arthur and I can't describe my thanks for having you who never ran but stuck with me. I couldn't ask for better friends. :) And of course thank you to everyone reading this and to all the writers who's blogs I follow: those have always helped.

The new year is approaching, and as a thank you for sticking with me, I've been working very hard. 2014 is a year bringing changes and cool things to Arthritis Girl! And as these things come, just remember: They're all for you.

Friday, 27 December 2013

A Child's Double Point of View

I hope everyone had a wonderful Christmas! I certainly did. I've had the pleasure of being surrounded by family for the past few days. Although sarcastic by nature, I don't mean it sarcastically: it was actually nice to see my family again. Mostly. 
 
There was one event in particular that stands bright in my memory. It was towards the end of the night and only a few were left. My younger cousins were playing nicely when the inevitable happened- a crash and some crying. An object that wouldn't be heavy to an adult but very heavy to a very petite eight year old fell on said child's foot. Even though we're still questioning if it really "just fell" or "if he threw it at me," one thing I can't question is that the child was really hurting. What I thought was interesting was the reactions of three people.

The first person had a wonderful time with the child, however it was quite miserable for the child. He really enjoyed jokingly telling the child that she has to go to hospital and such. I really hated how he made it out to nothing

The second person totally denied the child was in pain. Rather than encouraging the child to walk on the very bruised foot which would help, she kept saying "it does not hurt, you can walk." Sounds familiar?

The third person is one who is very experienced in having a child in pain who is crying. She let the child cry, she spoke calmly and used stories and humour to distract, and she helped the child get up and walk without a struggle. 

My mum is such a hero.

Just a thought: Sometimes it doesn't take a chronic illness to see different sides of people. Sometimes it's a few pounds dropped on a child's foot.

Saturday, 21 December 2013

Rest is Magical

Oh, to be young and rested... Wait, that's a total contradiction. From what I'm told, young people usually live perfectly fine off borrowed energy, caffine and crashing at two in the morning until they're tweety five-ish. That seems about right to be honest. Except in the cases of if you have some sort of autoimmune pain disease: You still live off borrowed energy, caffine and falling asleep at two in the morning (and probably some medicines) but you tend to flare, be miserable and lots of other 'fun' things. Oh, to be young and chronically ill.

I'm a jealous person. I'm jealous that a week of school and Christmas shopping takes a lot out of me. I'm jealous there are days I'm doing work in bed or on my couch because I can't muster the strength to sit up correctly. I'm jealous that although I can and will push myself to go and do things, I often end up very painful and tired after (but never regretful). For goodness sakes, I'm jealous I can't donate blood!

At the moment I am writing from my bed. Everything is hurting. It would probably feel better if I got up and stretched but I just don't have the energy right now. I use to take an art class on Saturday for fun that I had to wake up at six for. I'm so glad the class is over because my body really needs rest after a busy week, as shown by today. I'm supposed to be going to a Chrismtas party in an hour and a half and I'm literally not getting up for another half hour. I need it.

Listen to your body. Rest is a magical thing for it, and even though there never seems to be enough  every bit you can get. This busy world doesn't seem to be made for us sometimes, but it doesn't mean we can't make it work.

Tuesday, 17 December 2013

Touch is Power

With all the wonders of science and technology, researchers have found a new therapy that is able to help with chronic pain, depression, and all sorts of diseases: Touch therapy. Different from massage therapy, touch therapy is simply a person touching certain points on the body to relax a person. Touch is also known to release chemicals in the brain that reduce pain and give joy. It's amazing what our bodies can do from touch, so why has it never been pleasant for me?

I've had arthritis since I was extremely young. There was evidence since I began walking when I was one year old. My uncles were very... Playful. They loved to toss around their nieces and nephews but I never had much of that. I recall it being very painful, and to think that was only the beginning! I didn't like games in school very much either as they tended to involve touch that was often a slap as they ran by (I was always rubbish at running anyway). I was about eleven when my 'friends' thought it was funny how I reacted to touch, especially my back. They loved to play "Watch How Far Elizabeth Jumps," often poking me in the back randomly. Five points if I jumped, and ten if I said "ouch." You won if I started crying. Though people changed through out the years, the game kept on. It only stopped at my sixteenth birthday party after an adult yelled at them for making a poor girl miserable on her birthday.

I'm still super sensitive to touch, especially recently. A oving touch or hug is pure bliss, and is the best medicine some days. But I still worry about people tapping my back, trying to get my attention not realising it's very painful. Thankfully I've no people in my life who like to play painful games anymore. But I still have horrible chairs, which isn't fun for anyone.

Touch is powerful. Use it wisely.

Sunday, 15 December 2013

"It's Only Psoriatic Arthritis."

A lot of people have the notion that some kinds of arthritis are 'better' than others. Some people argue it's worst to have an autoimmune arthritis than an osteoarthritis, and it goes farther to which kind of autoimmune arthritis is the worst. I think what we don't understand is that it isn't which kind of arthritis is the worst, it's how each individual's disease progresses that judges how severe it is.

Let's take a conversation from about a year ago. It was between my mum and the parents of a friend of mine. My friend's parents had run into my mum and they began to chat. My Friend's parents knew about my arthritis and asked about it. At that point I was not doing well in any sense: Not only were my joints a mess, my kidneys weren't so hot From the medication. Anyway, before my mum brought up that my Friend's dad asked what kind of arthritis it was. My mum told them juvenile psoriatic arthritis, to which he replied "Thank God it's not rheumatoid!" That's when my mum explained what had been going on with me, and my friend's father quickly learned its not the name that judges how bad the arthritis is.

I don't know what it's like to have any other type of arthritis, or autoimmune pain disease in general. What I do know is how much one disease can differ between two people. I have heard of people who have rheumatoid arthritis of one joint and are barely bothered and I know people who have osteoarthritis and can barely move. There are many other cases and examples. But the main point is we can't judge a disease by its name the same way we can't judge a book by it's cover.

Written by the person who wants to stop hearing "Thank God it's only psoriatic and not rheumatoid": Me.


Wednesday, 11 December 2013

Learning How to Hug

"If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what would ask for or want people to know?"

The one thing I would ask is for people to learn how to properly hug a chronically ill body. I've had hundreds of hugs in my life, and I can count on one hand how many were 'just right. ' There are times I really just need a hug. Unfortunately it can often be very painful: People squeeze too tight or are very distant and cold. People tend to not want to touch me because they know it hurts sometimes, and it's horrible to know people are afraid.

The ideal hug would be that given by gentle arms. Even though squeezes are painful, you can certainly wrap your arms around me. Don't be afraid of me; I promise I won't break or pass on my chronic illness. I might feel awkward and stiff, but I'm not trying to be cold: It's just how my body works. And please excuse my freezing hands! After all, don't they say cold hands means there's a warm heart?

Understand that I need a minute to hold on. There's so many times in a day I want to give up, but I know I can't. Often times I'm mustering every ounce of strength I have to keep going on. I don't want to have to do this by myself. Let me heal for a minute: Touch is powerful and healing, and I need all the healing I can get. Let me know I don't have to bear it alone and I have you by my side. I hope you  understand if there's a tear running down my cheek. You have the power to reach through the wall I put up that hides my illness, and that's a side people rarely see.

If you really want to help me battle my illness, it's simple: Learn to give gentle, loving hugs. They are much more important than most would think. 

Monday, 9 December 2013

I'm Such a Jerk

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 hurtful or if the way I talk could be taken the wrong way but I was reassured I'm not at all, and that whoever said I was is completely wrong. I didn't believe it at first. It wasn't until I cheered up another friend in my class later that day and was called a jerk by the same group earlier. I couldn't do this anymore, and I had to make my mind up now on what to do.

I had to make a choice. I could either fight back, or walk away. The situation stressed and tensed me too much to ignore it anymore.

I walked away. Okay, theoretically I did but I couldn't: I had a graphic design class. But I walked away from those people. I walked away because the strength I have is to battle arthritis. I walked away because I would rather have friends who called me nice than those who put me down. It was easy to walk away from the negative because I had so much positivity to go to.

Even the smallest removal of negativity from one's life can make a big difference.  Everything has been much better for me lately. I have a lot of positive people surrounding me and have been thriving in school and work. I've gotten the opportunity to help out in a few projects and your groups. Physically I've done well (except for recently). I've been much more confident too. A lot of good comes out of reducing the negativity in our lives. I encourage you to try and do the same. My only regret is not doing so sooner.

Thursday, 5 December 2013

Joyful Mother and Son

One place I can commonly be found is at the library, and that's not a surprise considering I volunteer there. I gets me up and moving, and I enjoy the work: Typically putting away books and tidying. The area I most commonly work in tends to be the children's room, which I love aside from the low shelves and the messes that appear as you're not looking. Regardless, I adore the library: Books are one of my favourite ways to learn. But I know too well it's usually people who teach us the most important lessons.

In my first few weeks there, I met a woman and her young son. The children's room was filled with children of every age playing or doing homework, and many parents supervising. I was shelving DVDs when the woman came with the little boy, the both of them with a spring in their step. The woman spoke with an excited voice, pointing out paintings the children had done earlier and the different sections. The boy didn't speak but he smiled at everything. The two bounced into the DVD section on an adventure to find all the Thomas the Train DVDs. I smiled at the two as I put films on the correct shelf when the woman smiled back and said, "He's autistic and doesn't talk." I didn't know why she explained that to me, but I accepted it, "I used to play with a boy who was autistic and didn't speak." She relaxed after that. When the boy found Thomas, he jumped up and down and made joyful noises. "He's just trying to speak," she told me. "He sounds very happy." I said.

It wasn't until they left the aisle that I understood why she took the time to explain why her son acted different. As they walked, parents and their children stared and even pointed at the very happy boy. The mother distracted her son, pointing at murals and posters and anything that was aware from the stares. It was easier to teach one person and help them understand than a whole group. To protect her son, she shielded him from what didn't understand him. She keeps him happy and unaware that people stare, and even make fun of him. Meanwhile I watch them deep in a conversation that is only verbal on one side but deep and meaningful for both. I've never seen that little boy frown, except once when someone scattered the Thomas DVDs. I hated that frown so much, I personally make sure all the Thomas the Trains' are kept on the same shelf.

I don't know why others don't accept difference, and make others feel like intruders. But we must stop putting all our energy into complaining that others don't understand, and instead put it on those who do. Though the anger that filled me when people stared at the boy was intense, it will never be as strong as the happiness I see when he and his mum bounce happily into library.

Tuesday, 3 December 2013

Thinking Away Pain

Waking up isn't so hard, it's the getting up part. In the morning my back is killing me and more recently it's extended to my ribs. They're just so achy in the morning, like I got punched there or something. It's odd and I don't like that. But it is a quite common symptom in autoimmune arthritis- of course bring it up with your rheumatologist if you are experiencing this. I think wake up pain and late night pain is the worst kind of pain because your focus tends to only be then pain, rather than other things. It hits you at a time when your most vulnerable, mentally and physically.

I once read that although we may experience pain in a different body part, pain always comes from our brain. It is best to keep our minds busy when we're in pain. It also explains brain fog. I try not to dwell on pain, but it's not always possible. So today I decorated my Chrismtas tree. It's a small, white little thing and it's all dressed up in red- it's warm and quite festive. I went through my wardrobe and gathered a large collection of clothes to donate. Right now I write next to my tree, all nice and cosy and I'll probably read after. Sometimes pain doesn't make it possible to do those things, but focusing on music, films or on books can usually be an option. It all depends on what you like.


“Pain is just a state of mind. You can think your way out of everything, even pain.” 
― Rodman Phillbrick, Freak the Mighty


Sunday, 1 December 2013

Gift Ideas for Arthur

As it is now December and officially time to start our Advent calendars, I think it's time for the dreaded C word. No, novt cortisone; Chrismtas! 'Tis the season for festivities and fun! I can't think of any time of year I love more, except perhaps the summer when I can actually move. Anyway, people are beginning to come up with present ideas for their friends and families. I can completely sympathise if you are struggling because there are quite a few people on my list giving me a run for my money (you know who you are). I am a firm believer in the thought being what counts the most- I'd rather recieve nothing but told how much they thought of me than something that was obviously bought in haste without a thought to who I am. That said, I think it's sometimes hard to come up gift ideas for those of us with chronic illnesses. Since most people aren't millionaires, my wish of a hot tub won't be on my list, but there are small things that are very appreciated.

1. Gloves, Scarfs and Hats. Many of us have a hard time keeping warm, and the thought to help us keep warm is greatly appreciated. Fingerless gloves and mittens are great as well, especially when they have flaps to cover the fingers when not in use. Buy one or two sizes larger if you are buying for someone who uses wrist braces. Hand knitted items are great presents, as one knows you stopped and took the time to really think about them. Keep the person's style sense in mind: My auntie once bought me a hat. I don't even wear hats and it wasn't one of which was even remotely my style. I knew she only bought it because it was my cousin's style, who got the same hat.

2. Heated Socks and Slippers. Along the same lines as the above ideas, these are good for relaxing and helping one's achy feet and ankles. Often these socks and slippers have small pockets to hold a heat pack, which is often microwaveable. Bonus points if you can find the animal shapped kind.

3. Books. I may be a little biased on this one because I'm a big reader, but I believe books are some of  the best gifts you can give. What's better than giving the gift of adventure, learning and imagination? Of course, this isn't appropraite for everyone since some don't read too often and might not appreciate the gift. But to the right person, it can be a wonderful gift. Now, this can be a tricky gift too as not only can it be hard to pick a title, you also have to take one's hands into consideration. I recommend asking one if they use an electronic tablet to read or if they prefer paper books. Gift cards for the tablets are perfect, as are book gift cards. I prefer real books. If you're stuck on trying to find a good book- particularly for a young person-, I recommend The Fault in Our Stars by John Green (A teenage romance, with a medical twist), The Book Theif by Markus Zusak (A World War II fiction), and Divergent by Veronica Roth (Dystopian Chicago, from the point of view of a teenage girl).

4. Restaurant Giftcards. Believe me when I say they're extremely appreciated. Just make sure it's arestaurant  that can cater to any dietary restrictions, if that may be an issue. If the person happens to be in a huge flare over Christmas, I recommend Giftcards for places that deliever. It can be a huge relief to not have to worry about cooking, especially if the person has a family.

5. Coupon Book. I don't mean literal shop coupons. I mean write down some things you could possibly do for the person on a little certificate, so they can use throughout the year. Not anything extraordinary, just little things. To drive them to an appointment, to cook dinner and little things like that. Don't write down anything you can't keep your word on. These are very helpful, especially during flares.

These are just a few ideas, and I'm sure there are plenty more you can think of! Just remember to really think of the person. It's honestly the thought that counts. I'd rather a thoughtful card than a football any day.

Friday, 29 November 2013

Roller Coaster Lifestyle

When I first began treatment for juvenile arthritis, I was put on a roller coaster: Mentally, emotionally and physically. I would say the first two years were the most wild, but there have been plenty of loops, hills and spirals along the way. Chronic illnesses tend to put people on roller coaster journeys. Nothing is set in stone, which means whilst things could go wrong, things could also go well. We're all at different parts of the ride, of which is completely different for everyone. But I think there are about four types of coasters we've all been on at some time.

  • The Wooden Coaster: The wooden coaster is generally predictably since you can see the front of the track. The thing about it is that it's not a smooth ride: Wooden tracks are rickety and although you know where you're going, it can feel like it can change at any moment. This track can instantly turn into one of the following.
  • The Steel Coaster: Typically very fast and unpredictable. Sure, you're view of the track isn't obscured however you're probably moving way too fast to even know what's going on at all. Though is a smooth course, it contains steep hills, bends, twists and loops that can really change your point of view.
  • The Children's Coaster: Probably the track everyone would most like to be on. Designed for the little ones, this track is predictable and gentle. Maybe a few small hills and a turn here and there, but nothing you can't handle. Of course, this can change rather fast into any other coaster. 
  • 'Space Mountain' Coaster: named in honour of the infamous Disney attractions, this coaster takes place in the dark. Nothing is predictable here. Full of sudden jerks, turns and hills, you never know what you'll get hit with. Anyone will agree this is the worst track. I've found myself on this track many times. I hope you never will be on it.
There are many other tracks, but I feel I've covered the basic ones. Whatever track you are on now, I wish it an easy ride for you. And remember, it doesn't have to be scary : It can be enjoyable. It just depends on what you make of it.


Wednesday, 27 November 2013

To My Dearest

This post, although seeming to be exclusive to a romantic partner, is meant for the people in life who make everything much better. It is meant for all the parents, partners, friends and children who are active in the lives of their chronically ill loved ones. 


To My Dearest,

I am sorry. I never meant to hurt you, but yet I watch everyday as you suffer. Sometimes it's easy to forget that chronic pain hurts more than one person, but I am able to see it hurt you often. I never wanted that for you- I can deal with my disease, but I don't want you to suffer it. And yet you do for me. I'm so sorry.

My Dear,

I am  sorry. As happy as you seem to help, I can see the sadness in your eyes. I never meant to need help to do basic things, and I never meant to make you help me. It just happened. I can see that it upsets you to see me like this, and it upsets me to see you putting on the brave mask that hides the sad in you. I'm so sorry.

My Dear,

I am sorry. I never wanted to put you through my disease. I never wanted for you to feel the pain, to experience the fear and to shed tears of the two combined. I wanted for you to be happy and free as a bird. It makes me happy to see you happy. I am so sorry.

To My Dear,

Thank you. For never leaving me alone. I've needed you: You've brought me through lots. And though there have been many bad times, there have been many good times. I love the laughter and joy we have together. I can never thank you enough, my dear.

Love,
Elizabeth

Monday, 25 November 2013

Paper Cut Amputations

We all know that one person who can make anything sound a hundred times worse than it actually is. Unfortunately, I am constantly followed by one. A pimple on the arm? Yeah, that's a horrible painful rash that is simply incurable. A paper cut? Might need to be amputated. A very light bruise? "There's lots of blood flow there so it's like daggers and knives." Fell on the schoolyard as a child? "My knees are still torn! I have the scars! There's probably still pavement in there!" Listen, I've seen those knees: if there are scars, obviously I am blind. 

You know, maybe I've just been sick long enough or injured enough times to see past the exaggerations. But really annoys me is everyone else gives into this person!! The sympathy is really... Pathetic. Yes, this is a jealousy story. But it isn't over someone else getting attention- that's the last thing I like. It's that people can care less over a person in twenty four hour pain for someone who is complaining about a pimple on the arm!

I know sometimes people do things to get attention. I don't know why they want the attention, but I can sympathize that no one likes to be forgotten. But I am not forgiving about one person being so concerned about themselves that it makes another person who needs help forgotten. Take it from the person who couldn't get up from her chair because everyone else was very concerned about , you guessed it, a small pimple on the arm. Of course, this isn't about me: I usually can get by without needing help. This is about everyone else who needed help desperately but didnt get it, because someone who didnt need it took it.

Friday, 22 November 2013

17 Things That Annoy Arthur and I

A List of 17 things that annoy us, in no particular order.There are many more than this, but I had to cut it down. By about seven hundred.

17. People who chew obnoxiously. Besides for the terrible annoyance, there's a bit of jealously in regards to my jaw: if I chewed like that, either Arthur or my mother would smack some sense into me. Not literally. Well, maybe Arthur.

16. When the bus driver doesn't pull up to the pavement close enough so you have to step down to the road then up.

15. Every pain reliever ad. They don't know what they're talking about.

14. When you're watching a medical drama on television and they get everything wrong.

13. When you make plans and it's seemed like a good idea... until you actually have to get up and get dressed.

12. When you have to explain to the doctor exactly what your disease is. "You're the doctor, shouldn't you be telling me?"

11. When someone says "It's just arthritis." "Yes, and this is just me resisting the urge to smack you... You know, if my hands didn't hurt from my just arthritis."

10. Cherry juice, honey, ginger, and green tea. If you know what I'm talking about, feel free to add more in the comments.

9. Brain fog. Especially the kind before presenting a report. To a huge class. Specifically the class with the cute boy.

8. When you've used the hottest water possible for your bath but the water is cold within five minutes anyway.

7. When the lovely outfit you picked out only looks good with the painful shoes.

6. Heat pack burns.

5. When an ice pack on a swollen, hot joint sounds so good, but handling the cold makes your hands hurt more.

4. Pain Medicine: "Symptoms may include joint pain..."

3. "Can't you just use that rub on stuff?"

2. When a nurse weighs you and it's two or three pounds heavier than when you weighed yourself. She's obviously jealous of this sexy beast- er, young lady.

1. When you struggle to open up a brand new jar, wasting precious spoons just to find out there was an already opened jar.

What annoys you most?


Tuesday, 19 November 2013

Bullied

Depending on where you live, it may or may not be bullying awareness week. Regardless of where you live, every week should be bullying awareness week. It's a huge issue that no longer is an issue within only schools but even in home with the increasing use of social media. Bullying within the work place is also becoming a huge issue too. Bully is an extremely common thing to be a victim of and/or witness. I know I have.

When I was younger, I wasn't bullied horribly by other children. I had lots of times where I was miserable, but it could've been much worse. I do recall, however, being bullied by teachers an awful lot. I was a very quiet and sometimes sensitive child- I cried one time whilst reading a book about kittens. Alright, I was a really sensitive child. But it's not an excuse for a child to be afraid to speak because she liked the silence more than her ears being filled with insults from the mouths of her peers and instructors.

I haven't dealt with bullying against me personally in almost four years. There are a lot of reasons behind the end of it, but the big thing is that it ended. My one regret is not speaking up. Maybe if I spoke up, it would've ended much faster, but what's done it done. If you are the victim of bullying, please speak up. It takes a lot of courage to speak up. I remember being too afraid in case they said I was just too sensitive or that I was actually the bully. I was scared that people would hate me for speaking up and that the bullying wouldn't get better or would get worse. But speaking up could be the best thing for you and other potential victims. You're not alone in this. I've been through it- and my email is right there for you in case you need someone to talk to. Don't be shy, I don't bite. :)

At the moment I work with a local organisation for younger teenagers who have problems with bullying and are having a hard time making friends. I love working with the group so much- I love seeing them as they make new friends and are able to stand up to bullying. I love knowing I've been able to help some stay safe. That's what I've been doing to make a stand to bullying- what are you doing?


Saturday, 16 November 2013

When Nurses Say It's 'Just' Arthritis

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 agony and there will be a dying patient who is in a lot of pain who doesn't really complain. But you cannot brush off a serious illness as 'just' this or 'just' that. That is completely unacceptable because it's not just arthritis (autoimmune or otherwise), it's not just asthma, and it's not just an allergy as much as it's not just a severe flare, or just an asthma attack or just anaphylactic shock.

I'm sorry. I bet I sound horrible to people on the outside, but it really hurts to be the person who is asking for help, only to be dismissed because it's just this or just that. We have to stick up for ourselves- not only as patients but as living, breathing people who just want some help. You shouldn't be treated like you're making a big deal of nothing: Of course it's a big deal! It's your body! That thing you walk around in? Yes, that's your own skin and you deserve to be cared for by a person who is supposed to care!

I really wanted to tell my friend a lot. I wanted to tell her that it was just my arthritis that just keeps me from working like everyone else and just gives me chronic pain. That it just caused kidney inflammation. I wanted to tell her that I just took immunosuppressants  to care just for my arthritis, and it  caused just hair loss, just nausea, just extreme weight loss, just colds that turned into more, just the feeling of having no blood in your head, just fatigue and social isolation resulting from such, and just a lot of other things she just can't understand because she's never been through it.

But I didn't say any of that. I don't know if I'm glad for not snapping on her or if I'm upset for not sticking up for myself again. Regardless of what I did, I'm asking you to never take that from anyone. Don't let them dismiss you, especially if you need help. Sometimes they simply don't understand and you need to help them along. Don't be rude- rudeness never gets us anywhere- but make your point understood when you can help it. Choose your battles wisely.

And remember, for every one nurse who doesn't understand, there are lots of others who try and care.


Tuesday, 12 November 2013

Getting Through Eye Exams

I have the worst time at the eye doctors. All things about the eyes just creep me out- I can barely think about contact lenses. Unfortunately, autoimmune arthritis has a tendency to affect the eyes, especially in children. Lots of us have to do full eye exams at least once a year, if not twice or possibly more. Yay.

I've had a heck of a time through the years with my eye exams. I used to have to go twice a year but after switching to a new eye doctor last year, it was determined I could go once a year. But no matter how often I go, I never get used to it. Eye drops? Those are a struggle. Want me to look into the light? Yeah, we'll see about that. And don't even talk to me about glaucoma tests.

I may not like them at all, but I do have ways of getting through them.
  • If you can't seem to keep your eye open for drops, there is a way that could make it easier. Tilt your head back onto the head of the chair, that way you can push your head into the chair and you won't move. To keep your eye open, put one or two finger on the middle of your top lid and pull it open, more so at an angle than straight up. It will be harder for your reflexes to close your eye if the lid is held up at an angle.       
  • If they're shining a light in your eye, or anything else that makes you want to close your eye, focus on your other eye. It really makes it easier since you are no longer paying as much attention to the eye being examined.
  • If you're anxious, tell the nurse and doctor. They may understand: people are often very nervous for eye appointments. They may do things more slowly, explain everything they'll do before and as they're doing it, and they might have tricks to help you along.
  • Take deep breaths. It might help you loosen up.
  • If you just can't stay still, do what I do: Hold yourself down. Push yourself into the chair if you have to. You're probably moving just because your body is uncomfortable and is reacting how it would in nature. Sometimes you really can't help it, and that's okay.
  • Bring dark glasses- you don't want to wear the ones they give you, trust me.
  • Take someone with you. It could help to have someone you trust with you during the exam, but if your eyes are dilated its a good idea to have someone with you to drive or help you read.
  • Bring an iPod or something like that with you. Whilst you wait for the dilation to take effect, you might be bored and the drops will make it harder for you to read and tolerate light. Listening to music will be much better than irritating your dialated eyes with books or iPhone games.
  • Try to act like it's not a big deal: Have conversations, make jokes and laugh. The less scary nod uncomfortable you pretend it is, the less scary it will seem.
Oh course, I thing the most important thing is that it's fine to be nervous or scared. Our eyes are very vulnerable and most people are very sensitive to that area being touched. It's natural that we don't want others being near our eyes or getting light or drops in them. It's very intimidating. It's okay to be scared, but it's important to go anyway. Being uncomfortable for a bit is much better than dealing with the consequences of undetected eye problems.

Sunday, 10 November 2013

The 'Next Level' Medicine

In autoimmune arthritis, there are tons of treatments you can try- from DMARDs to diets. Okay, there aren't tons, but there are several treatments out there. You might be lucky and find that your first pick gives amazing results. But, more often than not you'll try a few. I did, and it took a few years to find what works best. To be honest, it should've happened earlier.

My first rheumatologist liked to stay with one treatment, regardless of what happend. I remember one DMARD made me extremely ill for the month I took it, and I later learned that they were extremely serious side effects. Towards the end of my two years with my first rheumatologist, I wasn't feeling well at all with Methotrexate and we weren't seeing any improvements. That's when I asked my doctor "Isn't there anything else we can try?" He sighed and I remember his exact words:
"We would be going to the next level after Methotrexate, and you don't want to get to that level."
I didn't know what it meant, but it terrified me. I was scared to death! I felt sick all the time and was sad to think that I would live like that forever because going 'to the next level' was much worse.

That was a few years ago. I still have no idea what 'the next level' is.

I changed rheumatologists because I needed new options. I didn't know what new options I would be presented with, if there were any at all, but we had to try. My current rheumatologist has given me lots of options and treatments to try- DMARDs, biologics, different NSAIDs and even going medicine free for a few weeks. I've been taking Enbrel for a year, twice a week. Even though I'm not anywhere near remission and still have my bad days, it's helped me an awful lot.

What still is shocking to me is that a doctor convinced me that I had no options but to suffer through something when there are more options out there. I know I'm not the only one because I've heard many stories of that, including from friends of mine.

You have the right to more options. There is usually at least one alternative or a way to make your current option better. You can take folic acid or even zofran to help methotrexate side effects. You can add Enbrel to methotrexate. You can try gluten free diets. We have so much power in our healthcare that we forget we have! Sometimes hospitals and doctors are so intimidating we forget that  they are on your team. Or, at least it's supposed to be like that. You as a patient have the right to refuse and rights to a second opinion. You have the right to listen or ignore. Choose your actions wisely, but trust your gut. It's your life.



Thursday, 7 November 2013

Chronic Questioning

When I was little, there were a few children in my class who had allergies to peanuts. Obviously, at the age of nine I didn't know much about allergies since they never really affected me. We were informed that we needed to wash our hands after eating things with peanuts in them, and then the teacher allowed us to ask questions about the allergies. One of the children asked about if chocolates are okay, and one of the children with allergies said that it was okay only if they weren't made in the same place as peanuts were. That made me think about my favourite chocolate things so I asked, "Are chocolate biscuits okay?" And one of the children smiled and said, "yes, I love those."

"It's not a chocolate allergy, of course chocolate biscuits are acceptable," My teacher barked at me. Even though I still had more questions, I didn't ask anymore. I didn't like feeling dumb so I just sat quietly and hoped someone else asked the questions I wanted to ask.

That's just one example of a chronic illness going unexplained: A little girl was made to feel stupid for not knowing more about it. There are lots of reasons a chronic illness goes unexplained but this should never be the case. Sometimes we don't even know enough about it, despite having it ourself. Are we too afraid to ask and for what reason? Feeling dumb shouldn't keep you from asking about your diagnosis, regardless of how long you've been treating it. I know I don't understand everything about having psoriatic arthritis but I don't stop asking questions. It took me a long time to learn that not many people will put you down for asking a question.

Because of my experience, I try and be very kind when asnwering questions about chronic illness- just because it seems obvious to me doesn't mean everyone knows. Esepcially someone who isn't affected by it. When someone asks you a question- so long as you are comfortable of answering- please take the time to reply. You never know what an impact you could make. And if you're not comfortable, just explain that too.

Everyone has a right to learn without humiliation, whether it's you or anyone else.

Monday, 4 November 2013

My Nude Figure Lesson

Someone once told me the best way to get better at drawing is to draw the body. I still agree it's probably the best way to become better at drawing. Most artists who went to school to study art- and even some who didn't- have taken at least one figure drawing class. A nude figure drawing class, specifically. I have takens loads of those and it made me a better artist. It also made me grossed out of old men for a whilst, but that's a different story. Anyway, the class taught me more than just drawing skills though.

It showed me how different we all are. When we're little, we talk about how girls and boys are different. On blogs like this, We talk about people with disabilities and those without them having different bodies. But it seems like sometimes we forget that everyone is so different, and absolutely no one is perfect. We all have those imperfections we really hate about ourselves, and I've seen on other people: large surgical scars, wiry frames, a little extra fluff here and there, discolouration and lots of other things. No two bodies will ever be the same, not even those of identical twins.

Those imperfections however, are just the opposite: They're perfect. From an artists point of view, it would be so boring to draw a perfectly proportioned person, with perfect skin and perfect features all the time. Our differences are interesting. They give a body character and a story. It's only with these personal details that we can see beauty in the body and that we can celebrate it.

Be proud of your body. Love it. Love your features and celebrate them. You're beautiful, whether you realise it or not.

Friday, 1 November 2013

Dreaming Stress

Stress is a huge part of what makes autoimmune diseases flare. I love how everytime I read something on controlling autoimmune arthritis, it tends to say something along the lines of 'learn to control stress.' I feel as if that should be more of an instruction for bosses, teachers, and anyone else who seems to cause more stress in our lives. It might be up to us how we deal with it, but I can only do so much. We always say our health should come before anything else, and though it should, it won't always. At least for me.

Maybe I'm burning myself out, but I've been pushing past a lot of pain and fatigue to get work and projects done. I'm a young person: I'm working to pursue my dreams. Maybe it's my age, but achieving dreams triumphs a lot right now. My rooms a mess, my Enbrel is off schedule by a day (not a big deal: I don't let that become a problem), I'm tired beyond belief and sore. Right now, so much is taking my priority. It will for a few weeks more, so please forgive the lack of blog posts. Right now I'm trying for two a week but it might not happen. When this is all over with, I'm probably going to be in a tired, painful state whilst I recover. I'm not going to regret it though, because I know I'll recover from the pain but I will never forgive myself for not working hard right now.

Stress? It make arthritis worse. The best thing to do is control. Don't do as I do: please control your stress. And if you find a miracle way to take away stress, please let me know! However, I have found a few things that tend to help a lot:

  1. Always take time for you. I give myself an hour in the evenings. I like to take log hot showers to relax myself, and then kind of zone out whilst watching television. The nights I don't do that I feel worse the next day.
  2. Learn what stresses you. Even when it's one thing stressing you out, it may feel like everything is a source of stress. Although it won't take the stres away, you can feel more incontrol being able to separate stress from other things.
  3. Don't put more stress on you than you need. Don't sign yourself up for extra projects, accept help if you need it and just put away the uncomfortable othes and shoes- you can look dressed up and uncomfortable when you're not under more strain!
  4. Never neglect your treatments. I don't advise you to push yourself but if you do, it's more important than ever to follow through with medicines and treatments. Without them thugs could be much worse.
  5. Don't neglect the people around you. Let them know your under stress and are having a rough time. You shouldn't have to lose your relationships. I learned this the hard way.
It gets better eventually, just keep holding on.

Tuesday, 29 October 2013

Ancient Eygptians had Arthritis

I had just spent the day in an art museum. I love art, obviously, and getting to see art from history and present day was wonderful. I think the historical art pieces are my favourite between the two, just because sometimes I like to just look at something pretty and not have to think about it's meaning. As I was looking around at the section on ancient Eygpt, I had a sudden realisation:

Ancient Eygptians had arthritis.

Seriously! Think about it. Look at any ancient Eygptian picture of people: They're very stiff looking. Even their statues were very stiff and rigid. They loved the heat, Wore linen pyjamas all day, and knew more about medicine than many cultures at the time, using myrtle leaves as a basic form of aspirin and lime stone as antacid.

Need more proof? We even have a dance move like how they're pictured: The poor things! We've been picking on them this whole time not even realising it.  

Well, maybe not all of them had it, but someone had to. :)

Friday, 25 October 2013

Wake Up Pain

Sleep: My favourite activity. I can't seem to get enough of it! But the couple hours of inactivity isn't great for those of us with arthritis and other pain disease: Morning stiffness is an extremely common symptom. But pain can also be a huge problem in the morning, as I have been personally experiencing: Lately I've needed a half hour just to get out of bed in the morning.

Waking up and getting up are two completely different things. Waking up, you may experience anything, from pleasure of waking up to the sun shining, little pain and a day of relaxation  to a blaring alarm, lots of pain and a busy day ahead. Sometimes I wish the day starts when I say it can, having slept in enough to feel completely rested. But, that's not possible... Anyway, getting up is a process in and of itself. It's hard to try and move when you feel like you can't, and it's worse when you're in pain. Sometimes it seems like it would help the pain to just stay in pain, and I really wish I could.

I've been trying to do a few things to make mornings less stressful:
  • Sleeping in a stretched position can help with the pain. It's tempting to curl up, but it may be harder to get up in the morning. It may also put less strain on your joints. In colder weather, layering your bed with lots of blankets and wearing warm pyjamas and socks can help you resist temptation of curling for warmth.
  • Set your alarm clock for a half hour or even hour before you need to get up- and make sure it goes off a few times before you need to get up. Waking up gradually may help you feel more rested. It's an ancient Chinese practice I've read about.
  • Along with the alarm going off, take your pain medicines an hour or so before you need to get up. That way they have time to work and can make the mornings easier. Keep a glass of water and the right pill/pills on your bedside. I keep only exactly what I need because my mind is really fuzzy in the morning, and nothing says 'good morning' like extra pain meds.
  • Try to lay out your clothes, pack your bags and lunches and make sure you have everything you need for the day the night before, if you're able to. It makes the day easier. And if you're anything like me, it maybe ideal to put out two outfits in case I'm not in the mood for the first one. :) 
Mornings are hectic, stressful and foggy. They shouldn't have to be painful, but it's hard to avoid. I hope my suggestions can help! If you have any morning suggestions or tips, leave it in the comment section! I'd love to read it. :)

Wednesday, 23 October 2013

Knowledge Pros and Cons

Sometimes I'm not really sure if it is better to be a patient who is very knowledgable of their disease and similar diseases or if it's better to not know. It sounds odd but each end of the spectrum has it's pros and cons and I know each very well. Sometimes even a happy medium still has more problems than it's really worth, but you can't take back much knowledge.

Being a bit of an expert of my disease has lots of pros. I actually know what my doctor is talking about and can catch onto a lot of things before he says it. For example, last time I saw him he checked a bunch of tender points on my back and chest asking if they hurt. When he finished, I said "Did you honestly  just check me for fibromyalgia?" "No- yeah, I did." And I'm aware of why he does certain things- for example, sending me for an EKG when my heart was beating too fast or why my kidney problems are such a concern. Knowing a lot about your disease also means you are aware of normal symptoms  (to tell your doctor) and what might be causing it or what might help, and your more aware of things that are unusual and need to be told to your doctor.

The cons? Depending on your disease and yourself, knowing more about it might terrify you. Honestly, it's hard to get reliable facts and figures and what you see might not be true or might be rare. Listen to your doctor and go to reliable sources for information- especially foundation and hospital websites. Knowing the everything about your disease also means room for your imagination to wander a little- a fast heart rate from a brisk rate could begin to seem like inflammation. That sort of thing. It happens sometimes, it's common and I'm guilty of it. Not everyone does it or will, but it's human nature.

And what about the pros of blissful ignorance? Getting to leave the medical stuff (mostly) at the hospital. It's two different worlds, and what I would give to have that. Not knowing as much may also  make it seem less scary. I don't have a lot for pros because some others don't apply to everyone, but even then I think the first point is amazing on it's own.

The cons are powerful too. You might be more scared because you don't know what's happening. It might be dangerous in an emergency when you can't explain something. You might not know if a side effect or symptom is worrisome, and might not call your doctor. And you may not catch something the doctor says, which could be dangerous.

I think the best place to be is a happy medium. Though I know a lot know, sometimes I wish I didn't. But, it's what's worked best for me. You know what works best with you.

Sunday, 20 October 2013

Elizabeth, Please Burn Out

Dear Elizabeth,

What are you doing?!

You should be burning out any day now, and I'll make sure of that!

Really? Volunteer work? I get it, it's good for others... But not so for me. Let's pay a little more attention to who controls if you have the stamina to, alright?

School... I get it, you've got your priorities but I've got mine too. You can't neglect me so you can go to school. And now your doing Saturday classes... Really? You think you can handle that? Well, I'll make sure you've got your hands full between classes and me.

Oh, and lets not forget those stupid art projects your always working on. I know your working on lots of things, especially for The Girl with Arthritis, but what about me?! Don't you ever sit down like I want you to?

Elizabeth... I miss you. You're just so busy all the time... There just hasn't been enough time for me lately. You just don't pay attention to me anymore. I miss all the time we spent together: Can't we just have a bit of quality time together?

Yours,
Arthur
AKA Juvenile Psoriatic Arthritis

PS, You know how you need a half hour to get out of bed now? That's my message about needing more quality time.

Thursday, 17 October 2013

Nursing Concerns

I've had this one thing on my chest for a long time. It's a bit of a touchy issue but right now seems like a good time to say it. It's hard to say it nicely so I'm just going to say it how I see it:

I hate when people who don't have a drive to nurse become nurses. It honestly concerns me because I know so many people like that, one of them saying the other day '[Censored] this, I'm only in it for the money.' As a person who constantly receiving medical care, this is a bit horrifying.

Many other people don't care about my thought. "We need more nurses." "It's a respectful job." "It's a steady job." And lots of other things will and have been said in protest to my thought. But most of these people don't realise what an affect it can have on the main goal: Patient care.

I've been in and out of hospitals for years- both specifically for children and general hospitals for adults. I've met a whole variety of characters and I've run into many who were less than entusiastic about their profession: I'm not really judging based on the ones I saw only once. I'm talking about those who I got to know.

There is a difference between the nurse who taught me to inject my Enbrel, taking as much time as I needed and being very encouraging and praised a good try and job well done, and the nurse who rolled her eyes and scolded me for 'making a mess' when I (projectile) vomited uncontrollably for a day. There is a difference between the nurse who inserted my IV wrong and left it like that and the nurse who was scared to death when I reacted strangely to a medicine, ended up helping me walk because I could've collapsed with pain at any second and stayed by my bedside even though they didn't   have to. There is a difference between a nurse who tried their best to help a miserable time go faster and a nurse who just wants the job done. There is a difference between a nurse who calls back the same day when you need help and one who forgets to give a patient a way to get help. There is absolutely no biased to age or gender here: Believe it or not, I described four male nurses, four female nurses, four old nurses and four younger nurses.

I'm one of those people who takes the saying 'A job is what you do with your day, a career is what you do with your life' very seriously. I feel like careers like nursing should have a passion and drive to do- no different from a designer having a passion for art or an engineer a passion to build. Unfortunately, it seems to be a job for some. It's a draining career with rewards of its own kind, I know how easy it is to burn out because I have seen many burn out and never recover. I'm not saying it's easy. I'm saying it concerns me when people who are already burned out take their first steps into the profession.

There will always be one rotten apple that spoils the bunch. But please, don't let that happen. Nurses are great people: Most went into the field really wanting to help people get better. For all the nurses who couldn't care less, I've have dozens who cared so much!

Monday, 14 October 2013

'The Fault in Our Stars' by John Green

One of my favourite books is called 'The Fault in Our Stars.' I've read it about five times this year, and I couldn't help but fall in love with it again and again. This book is different from any other books I've ever read; not only did I understand it, it understood me. That might be a little odd so I'll post the bit on the back:

"Despite tumor-shrinking medical miracle that has bought her a few years, Hazel has never been anything but terminal, her final chapter inscribed upon diagnosis. But when a gorgeous plot twist named Augustus Waters suddenly appears at Cancer Kid Support Group, Hazel's story is about to be completely rewritten."
Other than "Fiction," it's hard to really describe this book. It's labeled 'young adult fiction,' but despite that being the target audience, it doesn't quite fit. It's a equal mix of teenagers and medicine- perhaps you could call it 'chronically ill young adult fiction.' Though my healthy friends loved the book as much as me, it was different for me. It was personal.

I don't have cancer (knock on wood). But I could relate to so much of what the main character thought and said. Though our diagnoses are different, we are both chronically ill. Hazel is a character I can relate to, she's a character I take a lot of comfort in (present tense). At parts my healthy friends felt bad for Hazel, I felt closer to her because she spoke a truth that I didn't know anyone else understood. There were times when a character would make a 'sick' joke and my friends would feel sad but I would laugh. The book made me laugh, cry, and feel less alone in thoughts that I've been too afraid to share.

I highly recommend this book. It's perfect for anyone of any age (well, not for children), whether they are chronically ill or healthy. This should really be required reading for nurses and doctors, and maybe even parents if their child (chronically ill or healthy) relates to it as much as I did. This is a book I can turn to when I feel like the world doesn't understand.

It is in a word, beautiful.

Plus, they're making it into a film. And who doesn't love reading the book and then seeing the film?







Saturday, 12 October 2013

Fatigue

Fatigue. It's a common side effect with just about any disease that is caused by your immune system. It can be constant and severe at times. It usually strikes when you really need energy. And the worst part is, lots of people won't believe you! It's- once again- one of those things people will think your using as an excuse to get out doing things. Again.

There are lots of reasons we experience fatigue. From proteins in the blood to anaemia to simply being worn out from a flare, fatigue can come many ways. Lots of  people aren't able to fall asleep easily or simply don't reach a deep level of sleep, which can make fatigue even worse. So, what are we to do?

There is no magic cure for fatigue- but if you happen to be a researcher, please take note! But anyways, there are some things take can help. Vitamin D and omega 3 are always good for you and can really help. Taking a quick nap when you need it is always a good idea. And eating heavy, rich foods at night may help you feel more tired and fall asleep quicker. Never feel bad about yosf bring fatigued: It's not you, it's your body. You didn't do anything to feel this way and if someone doesn't understand, then that's their fault and not yours. You are amazing.

Wednesday, 9 October 2013

Instructions for a Bad Day

We all have them. We all have ways of getting past them. Listening to this is one way I do.




Instructions for a Bad Day

By Shane Koyczan

"There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape. Be diligent. Scrape the gray sky clean. Realize every dark cloud is a smoke screen meant to blind us from the truth, and the truth is whether we see them or not - the sun and moon are still there and always there is light. Be forthright. Despite your instinct to say "it's alright, I'm okay" - be honest. Say how you feel without fear or guilt, without remorse or complexity. Be lucid in your explanation, be sterling in your oppose. If you think for one second no one knows what you've been going through; be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone - that pain is part of the human condition and that alone makes you a legion. We hungry underdogs, we risers with dawn, we dissmisser's of odds, we blesser's of on – we will station ourselves to the calm. We will hold ourselves to the steady, be ready player one. Life is going to come at you armed with hard times and tough choices, your voice is your weapon, your thoughts ammunition – there are no free extra men, be aware that as the instant now passes, it exists now as then. So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you'd never make it through. Remember the times you could have pressed quit – but you hit continue. Be forgiving. Living with the burden of anger, is not living. Giving your focus to wrath will leave your entire self absent of what you need. Love and hate are beasts and the one that grows is the one you feed. Be persistent. Be the weed growing through the cracks in the cement, beautiful - because it doesn't know it's not supposed to grow there. Be resolute. Declare what you accept as true in a way that envisions the resolve with which you accept it. If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can - do more. There will be bad days, Times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend. Make us comprehend the urgency of your crisis. Silence left to its own devices, breed's silence. So speak and be heard. One word after the next, express yourself and put your life in the context – if you find that no one is listening, be loud. Make noise. Stand in poise and be open. Hope in these situations is not enough and you will need someone to lean on. In the unlikely event that you have no one, look again. Everyone is blessed with the ability to listen. The deaf will hear you with their eyes. The blind will see you with their hands. Let your heart fill their news-stands, Let them read all about it. Admit to the bad days, the impossible nights. Listen to the insights of those who have been there, but come back. They will tell you; you can stack misery, you can pack disappear you can even wear your sorrow – but come tomorrow you must change your clothes. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it's the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go."



Sunday, 6 October 2013

"Kids Always Outgrow Arthritis"

For children and teenagers with arthritis, there is one thing we hear very often.

"You'll grow out of your arthritis."
And no, it's not [usually] paediatric rheumatologists who tell kids this. It's other adults. It's the grandparents, aunts, uncles, cousins, neighbours, teachers, and sometimes even parents and other doctors. They don't know better and believe it is true, and may give them comfort to believe. They've heard it before: You can't possibly come up with that idea yourself. So who was that person who spread the idea?

Lot's of people, actually.

It is said that about seventy five per cent of children with arthritis in four or fewer joints will 'outgrow' arthritis without the need of drugs. It is extremely common for children to only have four or fewer joints affected, so it's very probable that the story of someone's child outgrowing arthritis would spread.

Another problem is that many people don't understand what remission is. A person may become confused if a child achieves remission, however relapses a few months after. That person might have thought the child was 'cured.' There is no true cure, and many times when one achieves remission through medication, they will continue having to take it even though they feel better. Unless a person has the disease and/or are educated on the subject, it's very unlikely they would know.

The idea of outgrowing arthritis is very common. I've talked to many children and teenagers with arthritis who say they hope to outgrow it. I've met teenagers who have outgrown it too. But I also know many people who are now adults who have had arthritis as a child and never achieved remission. Many friends have expressed their anger over not outgrowing arthritis or achieving remission by adulthood whilst many other kids and friends have.

When I was first diagnosed when I was little, my family told me not to worry because I would outgrow it. I have many friends of the same age with arthritis who either outgrew it or are in remission. I've never done either. Though it's true we don't stop growing until our early twenties, I still doubt I'd outgrow it. I also doubt remission in the near future. It doesn't make me sad though, because I was educated quickly that kids don't always outgrow arthritis. But if I didn't know, I think I would really be upset that something everyone promised me didn't happen.





Friday, 4 October 2013

Frustrating Arthritis

I think one of the hardest things about chronic pain to deal with is the frustration. Frustration and anger are the results of many things. "Why isn't the treatment working?" "Why can't they understand?"  "Why does the world have to go at such a fast pace?" "Why can't everything go back to the way it was before?" "Why did this happen to me?"

I wish with all my heart that I had all the answers, but I don't. I'm sorry. I really am, because I know having the answers could help a lot.

It's very common to get frustrated or even angry about these things. It's hard to always look towards the positives when negatives are thrown in your way all the time. It's okay. It's okay to feel upset because the pain is everywhere or because you're tired all the time. You're body isn't feeling well and your brain is aware. It's so aware that it makes you worried about if something is wrong, and sad when you know something is, and angry when it can't be easily fixed. It's normal. You did nothing wrong to feel upset or sad. It happens.

I wish there was an easy way to get through the frustration but there really isn't. Sometimes you can distract yourself and hide from it. Other times you're going to want to scream and fight. You're going to have to deal with the bottled feelings sometime or another. Whether you use your frustration to scream and fight, or to do something you need or like to do is up to you.

Wednesday, 2 October 2013

My Biggest Fear

Recently one YouTube, a very well known Youtuber did a video talking about what he is most afraid of. He said that since he is an atheist, death is the scariest thing for him. Imagining nothingness for eternity scares him a lot. Many people agreed, saying that death is their fear because of it.

How I see it, they probably don't actually fear death itself, they fear nothingness. Every fear we have tends to be for a bigger reason, and some of them come for bigger reasons. For example, I don't like the dark. It's not that I fear the darkness itself, it's that I fear there is danger I can't see. But that's not my 'biggest fear.'

I suppose you could say fear is pain. It sounds funny from a person who's had arthritis since before they could remember but it's true. I am actually afraid of actual pain, but there is more to it. I'm afraid of what's happening to cause the pain. I'm afraid something is wrong. I'm horribly afraid of suffering. I'm deathly afraid that pain will keep me from fulfilling my goals. Though pain may be scary for me, it's being kept from fulfilling my goals that is the worst. I'll toughen up and face any pain if it means I get to go on to fulfill my dreams.

It's often not our fears that is what actually scares us.  A lot of times the reason for our fears is our true fear.

I highly recommend writing down some fears and trying to get to the bottom of them. It helps us get to know ourselves more than we did before. It can also help you get past those fears, or at least understand them.

Monday, 30 September 2013

Arthritis Acne

As a teenager, there is one topic that is extremely unavoidable: Acne. It was bound to come up sooner or later. I thought it might as well be now.

I may be in my late teens, but I still have acne. I know it's fairly common to have it into your twenties or even older, but still. And it's no fault of my own that I can't get rid of it all: I've done my research and gave evey wash or medicine a fair chance of at least three months. I don't eat excessively greasy or sugary foods and when I do, I don't go overboard. And I'm one of the cleanest people you will ever meet. So why do I still have acne?

Arthur. Yes, once again Arthur is responsible for yet another unpleasant thing. Whilst I'm unsure how rheumatoid arthritis affects acne, it has been said that psoriatic arthritis can cause acne break outs. It makes a lot of sense because I've gone without an acne wash for a month to see how my skin is, and there's little change. Well, that's a lie. Due to some recent problems, I haven't had Enbrel in two weeks and this week I'm breaking out. My skin was great on Enbrel because that's what suppressed my immune system and thus Arthur. I've also been very clear during times Arthur was under control but broke out horribly when he acted up. I've also talked to others with the same problem and it seems to be the same routine.

So what can a person do? Honestly, I don't really know. We're still not completely sure about the connection of acne and arthritis. I'd say that taking your prescribed DMARD or biologic should help, since they surpress the disease that causes it. If your not, trying differen washes would be a good bet: I recommend ones without benozide peroxide because they're easier on the skin, but it may work for you. Psoriatic arthritis acne may not just stay on the face, it may cover the body. This is harder to treat, but there are a few things you could try to help. Make sure you change your pyjama shirt every night and change your sheets and pillow case very often. It may also help to use unscented soaps in the shower and use warm water rather than hot water.

It's a little known about thing, but trust me when I say that if you have arthritis and have acne that flares as the arthritis des, you're not alone. Not at all.

Friday, 27 September 2013

Tendinitis

I've always had arthritis. Okay, since I was about two years old I have had it. The odd thing about not having a proper diagnosis until a few years ago is still puzzling. Especially because of what my mum went through for years trying to get someone to take her child's medical condition seriously. You see, there were quite a few things that weren't exactly 'right' in my medical life for a number of years. Being diagnosed with tendinitis is one of them.

I've had the privilege of being able to have access to some great hospitals. One in particular was called the 'best paediatric hospital ever' or some rubbish like that. I'd been there with disappointing results in the past, but we hoped I would be different this time. I was about ten years old, with no diagnosis and a flare that required hospitalisation for a week just two years prior. All signs pointed to juvenile arthritis.

Tendinitis. The world class doctor walked in, sat down, scanned my chart quickly and announced "she has tendinitis." He said ibuprofen would do the trick, wrote a note saying I could limit what I do in gym class and sent me away. World class treatment, eh? I know that in psoriatic arthritis, tendons may swell but I don't give him credit for noticing. Mostly since he didn't touch me and didn't have any X-rays or scans to reference.

Diagnosis is a difficult thing. It can take years to be heard (it took me about ten years). Don't give up in finding answers! You can't make something better until you know what's wrong. And don't let them dismiss you as normal; Normal isn't painful. You can't fix normal.

Tuesday, 24 September 2013

Rheumatologist Dating

Your hearts racing, palms sweating. They'll be here any minute, and you're very nervous: After all, They could be the one. It's the first time you two will meet, and you hope sparks fly. This could be the perfect match, or the worst.

It's remarkable how choosing a rheumatologist is like dating. No two are alike, you get to know each other after time, you'll always remember your first, there might be lots of break ups, and somewhere out there is "the one."

Seeing a new rheumatologist is almost always overwhelming, especially if it's the first time you're seeing them. Unlike your GP (primary doctor), you will (probably) see them more often than once a year and ocasionally when you're sick and need help. You will get to know your doctor, just give it some time and don't be discouraged. What matters at the very start is that they get on the right track of diagnosis or treatment if you already have a diagnosis. The first visit will probably seem quick or confusing and you probably won't understand the doctors mannerisms yet. If they don't take your seriously from the start, don't bother and find another. However, if they seem to be on the right track, it will be worth it to stick with them. Beginning treatment with them may be your best bet as well. The first visit tends to be brief whilst the second seems to be very thorough, of course it could even be the third if there are even more issues to try and find the bottom of.

I broke up with my first rhuematologist. I stayed with him for about a year and a half. He didn't diagnosis me compleftely, I forget if He said I had JRA or just JIA. I think that was because most of his patients had JRA. The main cause is that we didn't Always see eye to eye with treatments- he didn't mind that I was very ill on some medicines so long as I was taking them. It was just best to move on. I had been lucky and met another rhuematologist on a day my rheumatologist wasn't in. This was the one I moved to and we've been together for almost four years. It's been a wonderful fit, especially since my currency rhuematologist is more experienced with more kinds of arthritis and autoimmune diseases.

Don't give up. There is a doctor out there who will help you greatly and never leave you. It's just the matter of meeting.

Saturday, 21 September 2013

"What's a Flare?"

I've only really considered myself to have one flare in my life. I was eight years old and hospitalised for severe hip pain, high fever and dehydration. You literally couldn't touch me I was in so much pain. I know how bad my arthritis can get- that bad- and thankfully it's never happened again. I've always thought that it was only when my pain got to that point that I'd be in a flare up. Otherwise, its been bad days, bad weeks, horrible nights and fighting tears back when in public. But reading stories and following fellow arthritis warriors who have flares occasionally or often  got me thinking 'what defines a flare up anyway?'

A flare up is simply defined as an increase in symptoms from a patients usual symptoms. It may sound straight forward, but I don't feel like it is. Things with arthritis tend to be vague. The definition of flare is very vague. "How much pain do I have to have to be in a flare?" "Do I have to have extreme swelling to be in a flare?" "How long do I have to have increased symptoms for it to be considered a flare?" I can guarantee many a new and old patient alike asked these questions, just as I have. Honestly, I don't think there are any answers to these questions: they vary because our disease is different, just like we as people are different.

Even though I have an increase in pain and stiffness right now, I don't consider myself to be in a flare. That's probably because I was on my way to a 7:30 class at 6:50 yesterday. And because I have no real choice at the moment than to just push on. I know how severe my pain can get, and I'm thankful it's not even close to it. For me personally, I couldn't say I'm in a flare unless I was extremely ill. Of course, that's me personally. For you, that's completely different. You have a different level of pain from me; our diseases may be similar in nature but they're not identical. That's impossible.

If you find yourself in a flare right now, I wish you luck and gentle hugs- Flares are so stressful and painful, I can only imagine what you're going through. I know you'll make it through: You're very strong for battling this disease.

Thursday, 19 September 2013

Autumn Arthritis Help

Autumn is here! It's that lovely time of year full of beautiful foliage, warm drinks and for some cosy fashions. It's also when it begins to get quite chilly, which can be a real problem for a person with joint problems. Those with autoimmune arthritis definitely can feel the effects of the changing weather more than others. Whether it's stiffness from the cold or trouble keeping warm, I know I can relate. So, I've put together a bit of help for the fall.

1. It may be very cold at night, and our human reaction is to curl up our body whilst we sleep to keep warm. This position may cause a lot of pain in the morning (I would know from experience). Try to layer your bed so you won't be tempted to sleep curled up: it's better to sleep as of standing up, or legs bent loosely. You'll stay warm and mornings may not be as stiff and painful.

2. Drink plenty of warm fluids! It will help your body keep warm, will soothe you and the hot cup might help sore hands. Try different teas, since tea is very good for you. My personal favourite is black with orange zest (it makes it sweet, but not too sweet).

3. This is the time of year colds spread rapidly. In my school, almost everyone is or has been sick or just not felt right: We're quite a mess, especially in the mornings. Consider getting a flu shot, especially if you're taking immunosuppressants- any cold you get will take twice as long to fight or may get worse, and the flu would be horrible to catch with a low immune system. Wash your hands frequently and keep them away from your mouth, eyes and nose. Carry around tissues in your pocket, not only is it good in case your get a runny nose (like me) but if someone around you is coughing without covering their mouth, you could hold the tissue to your mouth and nose as a precaution.

4. Fuzzy socks. Honestly, wear fuzzy socks whenever you can. They're stretchy, easy to use with sore hands, gentle on sore feet and keep them warm and cosy. I tuck my pyjama bottoms into my socks at night so my ankles don't get cold.

5. Stretch! Don't stop exercising because of the cold! Bring outdoor exercises in, if the weather is too much to handle. It may help to exercise in warmth anyway since your joints will be less stiff than in cold. I've been doing volunteer work a lot recently, and it's really helped me keep in shape and exercise indoors (a lot of walking and bending).

6. You may have to take more NSAIDs or other pain medication as the weather changes. I know I need to. Keep track of all your meds and take them regularly. Even if you feel good, take your meds: It'll be easier to take them now and feel good later, than feel bad later and have to wait for your medicines to work (if you even have access to them!).

7. Wake up gradually. For me, I can't wake up and go (unless I have to or wake by myself). So I set my alarm clock to go off 25 minutes before I need to get up. It goes off ten minutes apart. The last five minutes I try to stay awake and just think about the day ahead and relax so my body isn't as achy. At the end of the five minutes, my radio goes off and I start the day with music whilst getting dressed. It may work for you, especially if you find it hard to get up in the morning.

8. Be careful! I've been stiffer lately, and I've been losing my balance and footing as a result. I imagine I'm not alone in this. Please be very careful!

9. Students, try not to overload yourself with books. Ask teachers if you can have a book for home and one for the classroom. Don't take anything that isn't necessary. And I know it's not always fashionable, but bags with thick straps will save your shoulders- very wise advance from my rheumatologist.

Fall is a beautiful time! Enjoy the traditions of the season, it only comes one a year after all! Happy Autumn!

Monday, 16 September 2013

"Courage is Not the Absence of Fear"

  "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 chemo and immunosuppressants because the pros outweighs the cons. I've watched children willingly take on their fears and submit themselves to pain because they hope the outcome will work. There is courage in this world. I've seen it first hand.

     Courage is not the absence of fear, rather the triumph over it. Fearlessness is not courage: A person without fear does not need to battle to face some thing, they can simply face it without a second thought. Doing something that has nothing to fear in it doesn't seem very important. It's when there is fear or danger in doing something for good that is there courage. I can only imagine nothing would be truly of value in this world if everyone was fearless, and courage was never needed.

Thursday, 12 September 2013

Exercise to Help Manage Juvenile Arthritis

This is part two of two connecting posts for a reader. The first section was all about diet changes to manage inflammation (Diet to Manage Juvenile Arthritis). This part is about exercise.

When you have arthritis, it's easy to fall into the trap of not exercising. It's not purposeful, it just hurts to move around sometimes. Though pushing your limits is not recommended at all, it's important to try and keep active. Keeping active will help you keep your joints from becoming too stiff and keeping them strong. You may be sent to physiotherapy (physical therapy) to assist, and this is the person who should help you the most in your work out planning. Your doctor would be another good person to consult with. And most importantly, listen to your body.

Stretching is good. Some people have found good results in yoga. Yoga can be very good for a person with arthritis but it can be hard to tell what our bodies can handle. As a person who couldn't handle yoga, I recommend talking to your doctor physio/physical therapist first. They should be able to help you decide what you can and can't handle, and may be able to teach you appropriate poses. I don't recommend trying anything by yourself: it is easy to hurt yourself, especially with painful, stiff joints.

I used to swim a lot. I haven't much in the past year because I haven't had much time, but I used to swim once or twice a week. I highly recommend exercising in water: it's much easier on your joints and strengthens better than on land. I found that the swimming really helped me. If you have the opportunity to swim, I highly recommend it. If it's an indoor pool, that's even better because it may be heated (or at least room temperature) and that will help relax your muscles. It's probably also the safest exercise option for people with arthritis because it doesn't put as much pressure on your joints the way being on land does.

Mostly, I've found the best way to help control my arthritis is by walking and riding my bicycle (when possible). Since there is little way to avoid walking, by walking more often it can make it more tolerable. I do things like getting off my bus a sto early or walk to the shops to try and sneak more walking into my day. I also use to use an exercise machine that mimicked stairs to help make stairs easier. By strengthing muscles we often use, our everyday weakness and pain could be eased.

Any exercise is good for you so long as it's low impact (so tennis or running wouldn't be a good idea). Whatever you do, make it enjoyable so you'll want to continue. Also, stay safe: keep hydrated and don't push your limits. If your body says stop, stop. And start slowly if you're not used to working out: Do 15 minutes of whatever you choose for the first few days, then 20 and work up as you (and your doctor) finds appropriate. Sudden changes to your life style like a sudden strenuous work out can cause a flare: you need to build up to longer or more strenuous work outs.


Tuesday, 10 September 2013

Diet to Manage Juvenile Arthritis

Very recently, I received an email from a reader. She told me how she's trying to find information on how to manage juvenile arthritis through diet and exercise, but hasn't found a lot. She asked me to write about helping treat arthritis with exercise and diet, and I did so right away. Today will be able diet, and my next post will talk about exercise.

This was written with E in mind, but with the hopes others would benefit.

Diet

There are several ways to help arthritis. Unfortunately, there is no 'one size fits all' diet because different things affect us differently. Some people are affected by things like dairy, red meats, white flour and various other things. The best thing for us all (chronically ill or otherwise healthy) is to stay away from processed, fatty and greasy foods as much as you can: Eat as freshly as you possibly can, whenever you can. That doesn't mean (necessarily) to buy organically, it means that it's best to eat your vegetables without extra ingredients like butter or excessive salt. The basic 'arthritis' diet is a diet that is full of anti-inflammatory foods with few or no inflammatory foods. It's true that some foods affect our inflammatory levels more than others, and any reduction in inflammation can greatly. There is tons of information out there about what types of foods raise inflammation and which decrease them, so do some homework and see what you can swap out in your life to help!

Many people swear on a gluten free diet. I've heard it doing miracles and doing nothing. I would like to say right now that I have no personal opinion or experience with gluten free diets for arthritis: I've never tried it. I do have a friend with celiac disease, so I do have some insight into the diet changing lives. However, I don't want to go too into the subject. I just wanted to bring up the subject for anyone interested in looking into it.

There are many other diet changes to look into to! I've found personally that I cannot handle too much citrus, whether through a fresh source or otherwise. After I found myself particularly sore and painful a week after having citrus foods 1-3 times daily, I stopped completely for about two weeks. I found myself feeling much better. Though I still enjoy citrus fruits a few times a week, it's nowhere close to what I was doing before.

And as always, drink plenty of water. Our bodies are seventy per cent water, and they work best when we are hydrated. I'm horrible at remembering to drink, and recently someone came up with the ideas of setting alarms on their phone to remind them to drink something every two hours. I highly recommend it! Also, if water isn't a particular favourite, you do have other options. Tea tends to do wonderfully for those with arthritis, especially green tea. Also, fresh fruit and vegetable juices are very good. Eating foods high in water like watermelon and celery are good options as well.