Sunday, 30 June 2013

"My Meds Ran Out" Survival Guide

You may already know that I take Enbrel for arthritis. You may also know that it's working rather well- granted, I have my bad days but overall my symptoms are more manageable and I get no unpleasant side effects. However, what you did not know was that due to some bad planning ahead I am going to be without Enbrel for about a week and a half. Unfortunately it takes a week without Enbrel to experience symptoms at full force, and takes a week after starting again to get relief. This is going to be a fun three weeks.

So, in honour of my 'miscommunication' with the pharmacy, I present to you now the 'My Meds Ran Out' survival guide.

  • Back-Up. Make sure you have any NSAIDs your doctor prescribed or are otherwise able to take. Keep them close by in case you need them. Also, if it helps, write down what times you took them so you know when it should begin to wear off and when it's safe to take another if you need it.
  • Fire and Ice. Have your ice packs and heat packs good to go. Ice for swelling and heat to loosen. The general rule is heat to loosen and relax before activity and ice after to control swelling. Don't use either for more than twenty minutes at a time. 
  • Instant Ice. If you need an ice pack but don't have any ice, try this: take a water bottle, can of Coke-A-Cola or anything containing liquid. Wrap it in a wet paper towel or something of the sort. Put it in the freezer for about fifteen or twenty minutes. It should be very cold and last at least twenty minutes.
  • Hot Baths. Speaks for itself.
  • Take it Easy. Don't push yourself: if you are usually taking a DMARD or biologic, and push yourself whilst off it could end in a major flare. It doesn't mean sit at home and act miserable, it means don't begin training for the Tour de France if you haven't so much as touched a bicycle in years.
  • Make Time for You. Whilst off normal meds, it's extremely important to rest and recharge. It doesn't necessarily mean sleep any moment you can, and most certainly doesn't mean to forget the others in your life. It means getting the rest your body and mind need. Being off meds that work even a little can be extremely painful and stressful, your body needs kindness for you.
Of course this is a rather short, quick list. Feel free to leave a comment about your favourite 'My Meds Ran Put' tips and comforts.

Friday, 28 June 2013

Roller Coaster Rules

I love amusement parks. I enjoy the sights, sounds, food and generally speaking the environment. I also love rides. Whilst many rides will ask that people with back problems refrain from riding, I tend to ignore that. I really enjoy rides that spin or go down steep hills and all that sort of thing. But, of course, I do take certain precautions. I call them Rollercoaster Rules.

1. Before I go to an amusement park, I tend to read up on it. There are rides I simply won't do simply for healthy reasons and I like to know before so there are no surprises or disappointments.

2. My general rule is if it goes upside down, it's a no-no. This is because I understand the type and amount of force on your body, and I believe it would probably cause a painful spine. No fun in that.

3. Spinning rides are usually okay. Even the ones that stick you against the wall are fine because they keep your back aligned. Though there are exceptions.

4. Jerky rides are most likely not a good idea. They throw you around and that might not be a good idea with painful or stiff joints.

5. Sometimes the restraint is worse than the ride. If its painful to try and lift or get out of a restraint, ask for help. It's embarrassing, but it's not worth hurting yourself. I've several times have been able to go on a ride with no pain but be unable to lift the bar or harness, or be able to climb out of the cart. Usually ride attendants or a friend will be happy to help.

6. Pace yourself. If your not up for a ride, say no. Even if your friends are pushing you to, just say no if you don't feel good. Rather than going and possibly spending the rest of the day (and probably to orrow) in too much pain, or even getting hurt or ill, just sit off to the side. Take that time to relax, rehydrate and watch the people on the ride. It's way more fun than being in pain and nothing is worth it more than your health.

7. Of course there are times when you don't want to say no or are looking forward to a ride. Understand your risks and take precautions: keep your back straight, hold on tight, and make sure you won't slip and slide and risk injury.

This summer, many people will be heading to amusement parks. I'll be one of them. If you are, take care, be safe and enjoy.

Update: For the past few years, I've gone on many roller coasters that go upside down with no issues on my spine! But you should be very careful and listen to your own body. I found out I can't handle rides that go upside down without a head rest in a very scary way: on a ride that whipped my head back a few times, and caused a lovely snapping noise to come from my neck. 

Wednesday, 26 June 2013

Arthritis World vs. 'Normal' World

I suppose you could compare being chronically ill to being a bird in a cage. The bird wants to soar high in the sky, but the cage keeps you away. Having a chronic illness is similar: you want to soar but you're too sore. Or, you know, sick or something. It doesn't really matter what's holding you back, it's the fact something is. But the cage is also a symbol of something else: How different your life is compared to the lives of others.

I forgot what it's like to be healthy. I cannot tell you what 'healthy' life is like. I assume it's a lot like life now except without pain, hospitals, missing out and planning around abilites. I also assume you fit in better with the 'healthy' world. But I don't know for sure. The 'healthy world' and 'chronically ill world' are very different. I'm always reminded how different they are by people's reactions to my 'arthritis' talk. I'll say something like, "In total, I did about fourteen months of low dose chemo," see horrified expressions and then realise 'wait, that's not normal for them.' Sometimes I'll tell them what's happening 'behind the scenes' and it's worse. "I might be getting steroid shots in my jaw if it doesn't improve, but for now I'm taking this new NSAID and it's helping some of the inflammation." And they're like, "... What?!"

What's worse, I think, is when they don't get sick humour. For example, a few weeks I was invited to visit my auntie for a few days. I proceeded to joke "I just hope there's enough room in my bag between the meds and the sharps container!" I got that mortified look. Or when a joint cracks and I say, "Oops, broke another." Or even when the nurse asks me "what hurts?" And I say, "What doesn't hurt?" Better yet, when they say "are you still feeling pain," and I laugh and after an awkward silence realise they were serious.

Men might be from Mars and women might be from Venus, but there is no doubt in my mind that 'healthy' people and 'chronically ill' people are from different universes.

Monday, 24 June 2013

Our Amazing Bodies

At the moment, I'm wondering if I cut my foot off at the ankle joint, would the arthritis there be gone or would I have half as much pain? Either way, it sounds extremely appealing. I marvel at the strength of the human body. It's amazing what we can put it through. What's more amazing is what it can put us through.

I find it strange how one can be in so much pain but manage to get up and do what needs to be done. Whether they've got a slight limp or have to drag themselves on the furniture to stay up. And just staying half awake is a miracle on some days, and what an amazing strength that is when your body needs the healing power of sleep. 

But our bodies are not indestructible. We must take good care of them. In the summer, it's easier to forget  that we are in control of how we treat our bodies. So please be kind to your body this summer:
  • Don't force yourself into cold water (whether at the beach or pool). For me, cold water is extremely painful. People with autoimmune diseases tend to be more sensitive to cold. If you must, ease yourself in. Swimming is excellent exercise.
  • Don't over do it. Especially if your body is not used to the heat. Pace yourself- you'll get there, you'll just save a lot of spoons (energy) doing so. Anyway, what's so great about the fast track?
  • Hydration. We've read it over and over again, so I won't bore you
  • Stay safe in the sun. It doesn't mean you have to stay indoors (if you aren't too sun sensitive). It means protect yourself. I love the sun but I make sure to use plenty of SPF and cover up with light layers.
So as summer as come, please be kind to your body and don't over do it... Like me... Again.

Friday, 21 June 2013

Why I'm Not Becoming a Nurse

I remember being about three years old and announcing that when I grew up, I wanted to be a doctor. Even as a young child, I thought medicine was absolutely fascinating. Though my title changed from doctor to nurse, I loved the idea of caring for people. I wasn't interested in anatomy as much as I was interested in treatments and procedures. In fact, at the age of ten I could preform virtual heart surgery in forty seconds flat, tell you what IV and PICC stand for (intravenous and peripherally inserted central catheter- I never forgot), and I read medical journals all the time. It was adorable. Also, I thought hospitals were cool. I still think they are.

I always knew I was sick- we didn't have a name for it, but pain doesn't happen for no reason. I liked the idea that I would make sure no one would walk around knowing their sick but getting no answers. I wanted to be that miracle nurse or doctor who never gave up and let their patients suffer. When I was eleven and going through the process of being diagnosed with arthritis and being poked and prodded, I began to feel more strongly about wanting to go into medicine. But it became more of a matter of "I want to relieve the pain and listen to my patients, not do what I want even if it causes more pain." If anything, it was resentment over my doctor and that the medicines weren't working. It was after I changed rheumatologists that I realised medicine probably wasn't for me. It was that year when I began to take art and design classes in school, and I don't regret it. Art is a career that heals, though it's just in a different way.

Sometimes now I still wander back into the idea of being a nurse. I'm still very interested in medicine between reading studies, novels and watching those television dramas that get everything wrong. But frankly I don't think I could handle it. As much as I can separate myself from a book or television, I can't separate myself from real life. I couldn't handle having to write off someone because they "seem healthy." I couldn't handle giving a person a medicine that is supposed to help but makes them ill anyway. I couldn't handle a lot because I've been through it. I'm not saying nurses are bad people- I'm saying their strong because they can do it all. It takes a different kind of person to be a nurse and I can confidently say I'm not one of them. It's too personal for me. Nurses burn out all the time, but I think I've already done so.

Now that I've revealed all that, will people stop ripping me for not wanting a "real career as a nurse?" Anyway I've never heard of a 'fake' career.

Tuesday, 18 June 2013

Chronically Extraordinary

I was in a life drawing class with one of my friends. They noticed my nifty eraser grip, which makes it much easier to hold and use.

"Wow, cool grip." They said. We were setting up easels and getting ready for the class to start.

"Yes," I said, "Yes it is. It's so I can hold it without killing my hands."

"Well, aren't you special with your arthritis?" They remarked.

"Oh, I'm not just special. I'm extraordinary."

I don't know who you are. I mean, I might. But the odds are I probably don't. If I asked you to introduce yourself in as many one or two word sentences as you could, you would probably define your roles and highly important traits. Short and straight to the point. 'Mum.' 'Husband.' 'Teacher.' 'Student.' 'Athletic.' 'Outgoing.' 'Musician.' 'Young.' 'Artistic.' Just a few words would give me a better understanding of who you are.

And let's face it- illness is a part of us. We use words to describe how it affects our lives. 'Chronically ill.' 'Disabled.' 'Handicap.' 'Sick.' 'Arthritic.' 'Sufferer.' 'Sickie.' And tons of others I could name right off the top of my head. It's amazing how many words we use! When needing to arrange accommodations we say 'I'm Disabled.' When we try and explain why we have been 'sick for so long' we say 'I'm Chronically Ill.' But when do we ever say that we are special? I don't think I've ever heard that! When do we ever use a positive word when regarding living with an illness?! When they jokingly made that remark, it made me realise that I am special because I have arthritis. My chronically ill sisters and brothers go through so much, and yet are not 'out of the average?' Of course not! We're great, I preach to you! We are humans who have super strength to push ourselves -whether on a good day or in a flare- to go on with our lives. We are as precious and strong as diamonds. We are very extraordinary people, and others have a privilege to know us.

Sunday, 16 June 2013

The Alphabet

A few days ago I was tagged by Kelby of PeachyPain to do a survey. It was made quite clear that if I did not complete this survey, I would be cursed with bad breathe for five years. And so- much to the relief of my dentist- I will complete it now. And remember, if you break the chain you will be cursed with bad breath for five years. I'd better throw in that you will also be cursed so all your bottle caps will not be arthritis friendly.

The Alphabet Meme:

A: Attached or Single – Arthur and I are quite attached.

B: Best Friend - Two awesome girls- one I met in school and one I met through the Arthritis Foundation.
C: Cake or pie – Cake, by far. A small piece and a glass of milk at the end of the day is bliss.

D: Day of choice – 
Saturday- you get to sleep and go out.

E: Essential item – I'm torn between my sketch book and my bed.

F: Favorite color – Tough choice but I'd say coral since my wardrobe is primarily coral right now (summer clothes!).

G: Gummy bears or worms – Gummy bears since I don't think worms are pleasent.

H: Hometown - 
home is where the heart is.

I: Favorite indulgence- Definitely having a whole bar of chocolate

J: January or July – July because the weather is better.
K: Kids – None, but hopefully one day in many, many years.

L: Life isn’t complete without… -  People you love and who love you.

M: Marriage date – Not yet, but maybe one day.

N: Number of handbags – I only have a few- I can't be botherer to swap so I mostly use one.
O: Oranges or apples – Apples: so sweet and crunchy.

P: Phobias – Bugs... They're so gross.
Q: Quotes – “It does not do to dwell on dreams and forget to live." -Albus Dumbledore
R: Reason to smile – My lovely little niece. Sunny days. Famous art. Favourite books. Great friends.
S: Season of choice – Summer- no school, no stress.
T: Tag people – AriannaJenniMs. Rainbow
U: Unknown fact about me – I am a huge traveler- I have a world map in my room marked with all the places I want to go and the places I have gone.
V: Vegetable – Tomatoes- raw in a salad and a great sauce.
W: Worst habit - I tend to show my emotions in my face- if I don't like something, you can tell.

X: X-ray or ultrasound – Ultrasound since you see what happens whilst they're doing it.
Y: Your favorite food – Beef stew- just the way mum makes it.

Z: Zodiac sign – I don't read my horoscope or anything like that, but if I remember correctly I am an Aires.
Happy Saturday.

Thursday, 13 June 2013

When They "Get" That Arthritis Hurts

There aren't many times people really get what arthritis is like. But there are a rare few who do. And I can't stress how much I appreciate people like them. And I'm very lucky to have come across a few.

When I was about twelve years old I had this one teacher who absolutely loved me. She was sweet one day but could be very harsh the next, so I was rather wary of her. Regardless of her mood, however, she always had a smile and word of encouragement for me. Toward January of that year, she went in for carpal tunnel surgery. It didn't sound pleasent. Whilst talking to her after the surgery when she came back to teach, she told me about how painful her wrists were. That's when I told her I have juvenile arthritis. Her reaction was that of pure "I Get It." She was so upset to hear of the arthritis. So much so that she nominated me for an international student trip! She told me "You have perfect grades and go through all that pain everyday- you deserve it." That was one of the nicest things someone had ever done for me. Even though I couldn't go (you had to be 13 at the time of travel, of which I was not) I'm still so honoured that someone wanted to give me that opportunity.

The next year when I was thirteen, I also had another amazing teacher. I was often absent due to medical appointments, and when I was in school I was really tired, sick and just run down. This teacher always made it easy for me to catch up, never minded if I didn't want to do participate because I was just too run down and often let me work alone instead of in a group, which was easier when I wasn't feeling good. Sometimes I would write my papers on experiences in the hospital when we had to write about our lives, and she always would write notes of encouragement on my papers before handing them back. But I think what was the best is that she made her classroom a safe haven for me- no need to worry, no having to stress, no one could pick on me whatsoever, I could relax, and there was always someone listening.

I can't get over the amazing people who come into my life. There have been many more than just two- some in my physical world, some on this blog but all great people I care about.

Tuesday, 11 June 2013

Mothers' Juvenile Arthritis Pain

There are days I forget that even if they don't have it, Arthur is hurting a lot of people. But if there is anyone who is hurt by my Arthur more than me, it's my mum.

It's often said having a chronically ill child is a full time job.  And I believe it completely. Whilst they may not experience the pain their child goes through physically, parents see their child in pain and ill more than most people can imagine. They experience good days and bad days. And they are the ones who have to comfort and stay calm for their child through stressful and negative periods. It's heartbreaking.

I tend to forget how much my mum is hurting too. Every time I realise it, it hits me like a ton of bricks. Every time I see her eyes get watery when the Enbrel causes pain. Every time someone complains about having a little ache and she tells them her daughter has juvenile arthritis. Every time I realise she plans things around my abilities so I can have fun too. Everytime I see her fight to get what I need to be without pain. I could go on and on but I'd rather not.

To all the mums, dads, siblings, and supportive family and friends of people with arthritis- thank you. You're so strong for carrying the pains that arthritis gives. We couldn't do it with out you.

Sunday, 9 June 2013

How to Make Your Family Understand Arthritis

The other night I had family over. I have quite a large assortment of uncles and aunts, which means I have various cousins as well. Rest assured, there were a lot of people. And it was quite nice as well- we all truly enjoyed one another's company. And then there was the nice offer of sleeping over a relative's house so it would be easier to go to an event occurring that morning. I was thrilled and quickly threw together my things. And then I remembered something- it was Enbrel night.

It had been defrosting for a while and needed to be done- I had missed it the night before. So, I got ready to do my Enbrel before leaving. I held ice on my stomach to try and numb the spot and that's when I began attracting attention. One of my aunts had actually thought I hurt myself. When one of my uncles asked what I was doing, my mum explained and when he went to leave the room saying "I can't watch," my mum told him "oh no, you're going to watch. You're going to see what I see twice a week, every week." Sometimes I forget how that needle hurts her too.

So, with the quick dagger like motion, I stuck the needle in once I was all nice and numb and began to slowly inject the Enbrel. Some aunts and uncles closed their eyes or hid their faces. One aunt actually walked in whilst I was doing it and was horrified. One of my littlest cousins, aged eight, walked up to me, took a good look and was quite calm when she said "Why is it taking so long?" I smiled and told her that if I do it slowly it doesn't hurt as much, and I appreciated the brutal honesty of children.

When I took out the needle, I began to bleed like mad. Everyone, including me, was horrified. I had bleed after Enbrel before but not to the extent it dribbled (onto my favourite jeans). I must've scrapped myself as I was removing it. However my aunts and uncles helped by getting a paper towel to help the bleeding, and removing the paper from the plaster (band-aid).

It was only when they witnessed this that they realised Elizabeth isn't actually faking. That there is something wrong, and it affects my life in serious ways. That medicine- treatment- does not begin and end in the hospital. It comes home too, it follows me everywhere. And they had to watch me stab myself in my stomach to see it. And if that's what it takes, I'm glad to show them. After all, blood is thicker than water.

Friday, 7 June 2013

One Month Rheumatologist

Confession: Since I was about eleven years old, I have never gone longer than three months without a doctors appointment.

Confession: I forget what it's like to not have to be see so often.

My record for the longest time without a rheumatology appointment is three months, but that has on
only happened a handful of times. Mostly I go every month or two, depending on my progress. I honestly can't imagine life without frequent hospital visits. And I don't think that's a bad thing either. 

When we repeatedly do things that are typically unnatural and cause for alarm, eventually they become nature. A habit even. Whilst others consider going to the hospital quite a lot a bad thing, I began to see it as a good thing: It's an essential part in treatment of arthritis, and treatment is a good thing. I'm not ashamed that I need to be seen so often- my body is different from everyone's and it just requires extra care. And there are people who are seen more often than that, and that's okay too. Taking care of ourselves is a very good thing. Everyone cares for theirselves in different ways. I just wish everyone understood. A lot of the time my family are upset to hear that "yes, I still have to go," and "yes, I'm still taking the medicine," despite adding "but I'm getting better." And after the seven billionth time, the same reaction is quite boring.

But I know it's not so much going that is the bad part. It's after. After hearing bad news. Being sent for yet another test. And worse, not being taken seriously. Sometimes it's not having to go, it's having to deal with the aftermath. Occasionally it's a mix of good and bad that can leave you confused. It's more confusing than your doctor's penmanship.

Wednesday, 5 June 2013

The Diary of an Arthritic, Aged 11

The other day whilst going through some old notebooks and folders, I found my diary. I was eleven years old when I began to write in it, and it was a few months after I began seeing a rheumatologist. We didn't know what type of arthritis I had at that point, and we wouldn't for about two more years. Anyway, I couldn't help but share some of my eleven years old thoughts with you. I'm sure that little Elizabeth wouldn't mind.

"We played football today in gym. The teacher wouldn't let me sit out when I began getting really painful, so I started to think about Beatles songs and that made me feel better. I was able to finish the game this time too."

Aww. Good job little Elizabeth! If you want to read about that mean teacher, click here. By the way, that game only consisted of following behind a group of children who thought it was the Olympics.

"I don't know how I feel about having arthritis. I'm not in denial, I'm not happy, but I am happy that I have a name for [the pain]. It's hard. I just don't know how to feel. What's worse is [my friend] constantly brags that her ankle hurts to her friend with arthritis... I don't want to hear it; no one complains about every single pain they have, so why should she?"

Oh Elizabeth, you're going to come across a lot of people like that. And you're going to go from writing about it in your diary to smirking and saying "Yeah? I've got a pain in my bum too."

"I went to see the rheumatologist today. He said there was no improvement, but it hasn't gotten much worse so I guess I am okay. It's scary not knowing what's going to happen or if you're going to get worse. I don't like the insecurity. I'm afraid. I want the doctor to do something that will magically give us answers. Or take away the pain. Or something. But I think it's impossible."

The wise words of a kid who was in way over her head. And even many years after this was written, I can't help but still relate.

I suppose I'll leave you here. I think the little girl who wrote this may be embarrassed if I share too much.

Monday, 3 June 2013

The Game Called Arthritis

Don't hate the player, hate the game. And do I hate the game that is arthritis. It's a never ending game, it seems. And like games, there are winners and losers. There are days I'm most certainly winning, and there are days I'm far from any finish line or trophy. But with any game, there are rules that must be strictly followed. And they are as follows:

1.) Expect the unexpected. 

2.) Seeing a doctor for one disease and coming out with two is completely permitted.

3.) No cheating of any sort is allowed- magic pills, drinks or anything of the sort will not work.

4.) Pushing your limits will not be tolerated. You will be punished.

5.) The game may change at any time without warning to you.

6.) The game will go on. Winning is not a right- it's a reward some recieve for a well fought battle.

7.) No quiting allowed.

You have the rules, now go out and play your best.