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.