Friday, 30 August 2013

Arthritis Alone

I think we forget that sometimes it's okay to want to be alone. There are times we really need our own privacy, and it's a very natural thing. Contrary to popular belief, it's okay to need to step away from everyone and just be alone. I think with chronic pain, we need to understand that this feeling isn't depression or anxiety: it's natural.

I'm an introvert; I get energy from being alone, rather than a extrovert who gets energy by being around others. There are lots times I prefer being alone, and one of those times tends to be when I'm in pain. Not always, but some of the time I find it easier to cope that way. Being alone allows me to enter my own world and focus on relaxing, which works very well. And of course, there are times a good laugh with a friend helps.

When I'm particularly stiff, I like to be alone. Somehow it's easier to walk like a robot easier on my own than when I'm in class and I can feel eyes on me. In some ways although I try to be open about having arthritis, my bad days are still private. I don't like attention brought to it, unless it's necessary. I suppose in a way I'm trying to protect the ones around me. I guess I'm protecting myself too.

Tuesday, 27 August 2013

Shopping Strength

The other day I was out shopping with my mum. Whilst walking out of one of the shops, a few people gave me a dirty look. I didn't know what that was for, because I hadn't even been looking at them. I looked myself up and down to see if it was because something was wrong with my clothes, but I didn't notice anything. Then it dawned on me: it was what I was carrying. My mum had heavy bags, and I was carrying much lighter ones. I felt like a jerk.

It didn't take the dirty looks to make me feel like a bad person. I had always known how wrong it looked that an older person is carrying heavy bags whilst the young person they're with is carrying very light bags. I felt guilty about it for a long time, because it's really not fair to my mum. And I don't want it to be like that: I want to be able to carry the really heavy things. Noticing these things by  myself is guilt enough, but adding people staring is guilt to the infinite level.

And then there's my mother: the woman who refuses to let me carry heavy objects. She'll always grab  what's heavy and tell me to take what's left. And she doesn't care what people think- I wish I had that thick skin. Sometimes I'll tell her that I feel guilty since I'm the young one and I'm supposed to take the large bags and she waves it away and says, "Elizabeth, I'd rather you not be in pain."

Honestly, my mum is pretty awesome.

Sunday, 25 August 2013

Children's Ward

Recently I came across an old television series that finished when I was little. It's called 'The Children's Ward' and (obviously)  takes place in the children's ward of a hospital. The drama followed the lives of doctors and nurses, as well as the young patients- especially the teenagers. The series was aimed at older children and teens. Recently, I began watching it. I've watched the first three seasons and I'm quite enjoying it. Though I do have some observations.

Many of the diseases in the series are very real, and cover everything from aplastic anemia to alcoholism. However, children are perpetually in hospital, obviously for the sake of steady characters. I thought that was pretty funny. As the episodes went on, the series began to become personal. One character was in hospital for a long time, and I expected her to be very ill but it turns out she was hospitalised for psoriais. How about that? I've never heard of anyone spending weeks in hospital for psoriasis! Another girl on the season after was saying she's been in hospital for three weeks because of her juvenile rheumatoid arthritis. That is much more believable, and it was great to see the disease taken seriously.

It might be quite dated, but I've rather enjoyed watching it. I really liked how arthritis and psoriasis were shown as serious rather than 'just a little problem.' But also, I loved the lively environment. Though the actors were not portrayed as terribly ill, and were usually very active, it's not that far off from an actual children's ward: Where there are children, there is a will to play. Take it from the child who annoyed all the nurses with her toy piano.

Friday, 23 August 2013

Autoimmune Arthritis and the Jaw

Arthritis joint pain is one thing. I've lived with it long enough to know how to cope with it. I have found also easier to 'read' that pain: I can easier find what's increasing the pain and how I can help it. However, there is one joint that I find impossible to 'read,' and I have the worst time trying to find what's going to help it the most.

My jaw.

Most people will develop a click or pain in their jaw- or TMJ- at some point of their life. A lot of time, the jaw will heal itself with time and a little help. However, it's not that easy for others. There still isn't a lot of research about TMJ disorder and such, so the ways we treat it often have little scientific evidence to support it. Usually, prescribed treatment is a soft food diet, jaw excersises and stretches, splints, avoiding large jaw movements and overuse, and heat and cold therapy for six weeks. Many doctors are reluctant to go past this because it can be reversed. However, what's a person with chronic pain supposed to do?

We're not actually sure. There's no basic guide for jaw pain caused from autoimmune arthritis, unlike when treating any other joint. Most people are content to use conservative treatments such as the ones above, mostly since TMJ pain comes and goes. I wish it were the case for me- jaw pain for me has been chronic and worsening for a few years. I haven't seen the maxillofacial and oral surgeon yet, so I'm not sure exactly what will be my treatment plan.

So, what am I to do in the mean time? A few home remedies. They may not be perfect or work for everyone, but I've found relief.

  • Biting down on a towel or cloth. It's soft enough to do no oral damage. It keeps my mouth open enough to help ease stiffness, but closed enough to keep pain minimal.
  • Hard candy has honestly helped. It keep my jaw muscles busy and keep them from getting stiff,  without having to stretch and tire the joint.
  • I've found talking sometimes helps. I don't know why, but being able to talk or even cry about things helps me feel better and relieves pain. Maybe mental stress is more connected to physical stress than we thought.
  • Hot drinks can be very soothing. So can hot showers.
A bit of help. Hopefully I can find and share some more.

Wednesday, 21 August 2013

Blood Draw Smiles

I don't mind getting needles much.

I'm not scared of needles. I don't make a big deal about the little pain. I don't even loathe them at all. This isn't because I get blood tests somewhat often. This isn't because I give myself Enbrel shots twice a week. This isn't even because the pain of arthritis will always exceed a little poke.

It's because of a boy with a lovely smile.

A few months ago I was waiting in paediatric phlebotomy to have a blood test. The waiting room was empty when a woman pushing a little boy in a pram came in. The pram was packed with all sorts of things a mum would need on a busy day, but what was different was that there was medical equipment as well. I looked at the boy and despite being obviously ill, he wore a large smile. His mum was quite stressed out- having had a long day- and we got into a chat. She told me she really wasn't looking forward to her son's blood test. Not just because she couldn't bare to hear him cry. Not because it pained her to see him in pain.

But because his blood would be taken from a vein in his scalp.

I couldn't believe that, but it was true. I saw from the door as two people set up for this child's blood draw. I had gotten my blood drawn before it was the little boy's turn. As I was leaving,  he was being brought into the room. He gave me the loveliest smile.

When people tell me they hate injections with a passion I would never understand, I remember that little boy. It's because of him I do not feel bad for myself. I feel like I don't have the right to be upset because I met a little boy who was so ill and got blood draws from his scalp vein, but had the lovilest smile anyway.

Monday, 19 August 2013

Arthritis Perks

Let's face it, arthritis isn't a great thing. But there are things I like to call 'Arthritis Perks.' These are nice things that happened because I have arthritis. They definitely don't make up for having to deal with Arthur, but they certainly make things more tolerable- which is why they're 'perks' and not 'advantages.'

Even though I did have a horrendous time with some gym teachers, there were some great ones. They let me participate as I could, and sometimes they'd come right up and say 'Elizabeth, you don't have to do this.' And I was alright with that! A few times when I was in swimming class, we had to swim laps across the pool. After each lap, you had to get out and do ten push ups and ten sit ups. The teachers just let me swim a little, and I was fine with that. Honestly, I had a hard getting out of the pool when I got tired, sit-ups were always painful unless I was on a soft surface and push-ups just aren't possible. But it didn't upset me that I wasn't able to do the sit ups and push ups because I didn't want to do them anyway- I would've looked like some class of dying animal. In front of a class of all boys.

Even though constantly being seen in the hospital isn't terribly fun, I did find ways to make it work. When I was going to absent, I would make sure the days I would miss school would mean I missed things I didn't particularly want to do. Days I had gym class were preferred, as well as Mondays and any day I was supposed to present something. Now, I try to make sure any day I miss is a Friday. That way throughout the week I get everything done, and get a long weekend.

Since I was young, my family (aunts and uncles, not my parents) always expected me to participate in some class of athletic activity. This is because my older female cousins always did dancing lessons, gymnastics or something of the sort. Though I did iceskate for a year and occasionally horseback rode, they didn't feel like that 'counted' and tried to push me into doing whatever my cousins were doing. I was never athletic, and after I was diagnosed with arthritis thankfully they stopped trying to get me to be. I had an excuse to tell them straight out 'no' without attempting to politely tell them I wasn't interested. It was definitely a great to have an excuse!

Sure, it might not be a lot. But it's better than no good at all. When I was younger, I was taught a game where you list all the things you are  optimistic about, even in a negative situation. Even though I have arthritis, I'm glad I have a reason not to play sports that I barely like and that I get a reason to skip a day something. Of course, I'd be happiest without arthritis but I'll take what I can get.

Saturday, 17 August 2013

Horrid Health Teacher

So we've heard about my horrible gym teachers ('Horrible Gym Class'). But what I haven't told you about is my horrid health teacher. We'll call her Miss A.

Miss A was a new teacher, who had only just graduated the year before. We were the first class she had ever taught. And by the end of it, I prayed we would be the last. Although she started out quite nice, it quickly escalated. At this point in my life, I was diagnosed as just juvenile idiopathic arthritis. I was also taking Methotrexate and wasn't feeling well- I was always feeling sick and cold. Rest assured, I had no tolerance for nonsense. Unfortunately, that's all the class was.

I would like to let you know right now that she knew I was sick. She knew all about my arthritis and getting shots and stuff.

In one particular class, we were talking about drugs. The ones you inject, in particular. That's when Miss A informed us that the more often you have injections, the more likely you are to become addicted to drugs later on. And there I was, a young girl taking a shot every week and blood draws once or twice a month. At that point, I just wanted to stop being poked and prodded. And she looked at me right as she informed my class of this. To this day, I still can't tell if she said that because she actually thought it was true or if she just wanted to see me get mad. And no, she was not talking about drug dependancy of individuals who use pain medication for long periods of time to relieve chronic pain- which happens and is not purposeful. She actually said "people who get injections more often are at a higher risk of becoming addicted to injectable drugs later on." Please, tell my friend E all about that: He was injecting himself with insulin because of his diabetes at that point.

I also remember her telling us about what a person using drugs may look like: Pale, sickly looking, tired all the time and with awkward movements. Guess what I looked like? You got it: Pale, sickly looking, tired all the time and with awkward movements. I don't think this would've been so bad if she hadn't been staring at me the entire time. It was worse when I got up to go to my next class and was limping and she looked me up and down.

Miss A really didn't care for me. I only participated as much as I needed to in her class, and the rest of the time I sat scribbling in my note book with a smirk. I really thought she was an idiot, and still do. I mean, she began to tell us about alcohol. However, she didn't really feel the need because 'it's safer with much less risk of addiction,' and 'not dangerous.' Tell that to the boy who lost his brother because of a drunk driver, and to my friend who's family has a huge alcohol problems. I really hated seeing him blink back tears.

I honestly have had an excellent education. I ended up being accepted to one of the best schools you could go to, and even when I was younger I went to great schools. Almost All my teachers were amazing. But not Miss A.

Thursday, 15 August 2013

"How Are You Doing?"

"How are you doing?"

This is a question that doctors and nurses often ask. 'Same as normal'- my normal, not a healthy person's normal. It's just the life I got use to. It's this life where pain is constant, and that's accepted because we have no cure.

When other people ask me this, sometimes I know they care. And that's great- I can't thank them enough and I'm very grateful to have them. I know that they want to hear good news, and sometimes I have it and I'm happy to share, but a lot of the time I don't. Unfortunately, it feels like they only want the good news, because otherwise everything is depressing. And I feel guilty that I can't give them the news that they want to hear, so I tell them 'It's alright.' It's not a lie because most of the time I can manage. Even then, I see the whole hearted smile fade a little bit because I didn't say 'I'm cured.'

Others really don't care. And that's fine with me, it's no different from discussing the weather with a person you don't know too well. I know when people can't be bothered, so I tell them I'm good and move on. But there are some who insist that others hear them ask me, so they sound caring. I mean, some even ask 'how's the arthritis?' And I always say 'I'm doing fine.' And they'll say 'that's good,' and move on. That's all, it's like asking the time of day. I'd rather give them an easy answer than let them know I'm having a bad day or week, because I'd rather recieve disinterest than fake sympathy.

And of course, there's another group entirely that asks how I'm doing. They are the ones who care so much and who understand because they've gone through it- either themselves or even through me. They are my chronically ill friends who I talk with online. They are the few family members who have seen everything I've gone through and try to understand. They are the friends who get it. They are the ones who matter most.

Tuesday, 13 August 2013

Anatomy of a Long Day

I am quite aware we all have our own struggles with chronic illnesses. But I'm sure we are not too unique in the case that we all have experienced a long day of medical care. Whether it's infusions that take several hours, test after test, bad news and more bad news, or appointment after appointment, I'm confident when I say we've all been there and have done that. Recently I had a very long medical day. I wrote down my emotions and thoughts as the day went on so I could share with you later.

7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off.

7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by.

8.29 am, The little cafe near the hospital has the best eggs ever. That and a great cup of coffee is probably the best way to start a long day. I know I'm in for a long day. I'm also a bit nervous because of some undiagnosed kidney issues. I don't know if today will be the day they can confidently say 'this is what's wrong,' or 'this is how we fix it.' Better yet, both.

9.34 am I'm waiting in Nephrology (kidneys) for my doctor. They ask for a urine sample as you're signing in. I really couldn't go, and they said it was fine and to wait until I could. When I finally could, I was in the exam room. I had taken off my shoes from when they wanted my weight and forgotten to put them back on. By the time I had realised it, I was already halfway to the toilet. Oh well, I wasn't going back for them now.

10.31 am, I had just come from nephrology. They're still not sure what's going on but want an ultrasound. My kidney problem is rather painful: I'm constantly getting side pains. Even though my rheumatologist is concerned, they're not. I hate how this is so much like my arthritis diagnosis: no one believed me or was concerned for years. Later when someone finally took me seriously we found out it was a serious disease. It's honestly frustrated and scary. And painful.

11.12 am, I just came from the ultrasound. It's typical that they let the radiologist on hand review the results before letting the patient go free (as if it's a prison). Usually it takes five minutes and he won't even come in the room. I was a bit surprised when he came in and seemed concerned with my kidneys. I heard him say rip, which can either be a rip like a tear. Or RIP on a gravestone. So exciting! Off to rheumatology.

11.33 am, I just saw my radiologist rush in asking for my doctor. Slightly horrifying. Slightly.

12.30 pm, My rheumatologist informed me that my kidney ultrasound appears normal. I love how my hospital works: It's a team. But anyway, the news is disappointing. I mean, it's good that it looks normal but that doesn't explain pain. I know they're not going to do anything about it now, just follow up. If you don't try and solve the problem, you can't fix the pain. I guess it's another pain I have to get used to. First joint pain, now flank pain. Nothing will ever work in my favour, I am sure of that.

My rheumatologist also informed me that my jaw MRI results were quite interesting. I have a slipped disc in one side of my jaw. Also, I have erosion of the joint from years of arthritis (I knew I wasn't going crazy with jaw pain!). And my jaw didn't develop probably. I was referred to the head maxillofacial and oral surgeon in the hospital and have an appointment in the next few weeks. Yay.

But in other news Enbrel is great and I have more range of motion! That's always a great way to end a rheumatology visit. He even said we can try going two months without him- that's amazing.

1.08 pm, The woman who took my blood was simply lovely, I always love having nice conversations. That always makes the closure to my hospital day better.

1.37 pm, Late lunch but better than none. I'm surprised I got out this early; There are times I'll go in at 9 but come out at 5 or even 6. I was starving and tired. Now, I just want to go home.

2.01 pm, Waiting for a train, I saw a really fit guy. He smiled at me and I smiled back. I probably looked terribly run down but I suddenly felt so much better about myself. He looked like he was about to say 'hello' when my train arrived, as did his. Why can't trains run on a less strict schedule?

2.10 pm, Trains are dangerous. They give you too much time to think about what's going on, but with little freedom to express these thoughts. It's on those rides I ponder why I'm sick. Or what's wrong. Or why no one can figure out what's wrong. Or do anything. All that sort of thing. If I can't just be healthy, I'd at least like to know what's going on and how to fix it. I'm terribly frustrated and aggravated. I swear I'm never going to be healthy because when one thing goes good, another thing goes wrong.

This is obviously not the longest day I've ever had. I actually expected it to be much longer. However it was long, and draining. It's funny how we go to hospitals to feel better but seem to come out more tired and feeling worse. But I did want to share my thoughts on the day, and how I felt. Moods and feelings fluctuate, energy is ever depleting but life goes on anyway.

Sunday, 11 August 2013

'Thank You's' for Everyone

Everyday, people everywhere make a difference in the lives of people with chronic illnesses. Even people you only encounter once for a short time can make a huge difference. What's wonderful is when people who don't have to care, do care. Today,  I'd like to call them out and thank them.

Dear Mrs. W,

Thank you for really taking everything I was going through into consideration when you assigned class seats. I really appreciated sitting next to the heater, in the back where no one would bother me and where I could stretch out.

Dear R,

Even though we're just school friends, thanks for really caring when you found out I'm chronically ill.  I was so touched at how concerned you got the first time, and all the times you become concerned now.

Dear Rollercoaster Attendant,

Thanks for releasing the restraint for me when I couldn't do it like everyone else. I know it's a tedious job, so thanks for not appearing annoyed at all. And a huge thanks for when you told all the people laughing at me to shut up. That meant a lot.

Dear Attractive Guy at the Train Station,

Thanks for smiling at me, and almost introducing yourself. Even though I had a bad limp that day. And tape and gauze over my blood draw poke. And was noticeably worn out. You made me feel pretty and confident at I time I felt broken. I wish our separate trains were just a little late, because then we would've had the chance to meet.

Dear Ms. K,

Thanks for relating your carpal tunnel pain to my psoriatic arthritis pain. I really appreciated the student trip you had nominated me for- I really wish I was eligible to go.

Friday, 9 August 2013

Exploitation of Health

Today I saw a picture of a baby who was born anencephalic. That's when the child's skull does not completely develop whilst in the womb. The child is born with a great deal of their head 'gone.' They do not survive longer than a few hours after birth. This particular child passed peacefully hours after his birth, and I know this because I've read an interview his family gave. I saw many of the pictures they took of him. Unfortunately, when I saw his picture it was not for a good reason. Instead, someone had said that he was in a car crash and his family could not pay for his surgery. A well meaning friend of mine had shared the picture, as the caption said if it was shared money would be donated to the cause. It pained me to see his image exploited, as well as well meaning people being tricked into sharing it.

This disgusted me.

I absolutely hate when people exploit one another. But to exploit the poor infant's health? That's very low. I'm not sure why people do that sort of thing- for attention or something- but I'm sure they wouldn't think it so entertaining had the baby been theirs. Health problems and children are probably the most exploited things out there. Funny thing is, most times the people who exploit these things aren't actually the ones who have it. If you turned the tables around, wouldn't it be so different?

Honestly. People make me sick.

By the way, I'd like to inform people that on Facebook, Liking or Sharing a picture or post will not donate money to anyone, no matter what it says. Let's put out the fire.

Wednesday, 7 August 2013

Born Into Arthritis

I've understood that people are not supposed to experience pain for a long time. I knew the concept at the age of eight, and understood completely by age ten. I know that sounds a bit impossible, but I've had arthritis since I was a baby and I grew up in pain. I didn't know that wasn't right. It's not that I wasn't in pain, it's that I assumed everyone felt the same. When no one else complained or talked about it, I assumed I wasn't supposed to either. Despite being stiff and limping, no one really asked me if I was in pain. I just thought it was completely normal until I flared when I was eight. All of a sudden, it was okay if I didn't want to run about like the others. The adults would tell the children, "Elizabeth's hips hurt," and I would get to sit and play my own games. It was amazing, but I didn't truly think my pain was out of the ordinary until I got a bit older.

To this day, I still forget. I still assume everyone on the bus home is in a lot of pain too. I still assume everyone is stiff in the morning. I still assume everyone can relate. I can't help but imagine that everyone else has chronic pain, because that's all I know.

Once when I was in Disney World with family, we were riding a bus back to the hotel. It was very crowded and my family was standing on the ride. A man offered my aunt and small cousin a seat. I thought it was very noble of him because after a long day of walking, I assumed it was very painful to stand. My aunt said she was happy to stand, and I thought she had gone mad. What about all the walking we had done today? Wasn't her child in a lot of pain? Then it occurred to me that although they were tired and sore too, it was different. I was putting myself in their place and giving them my pain. I thought it was amazing how in that situation, three people were willing to stand after a very long day of walking. It blew me away because I was in a wheelchair for part of the day but still felt horrible.

Many people are pain free for years before developing arthritis. I never had that experience. I think I'm all the luckier for it though, because I can't imagine what it's like not to have pain. I can't be sad about how it was 'before.' I'm lucky because I can't imagine or assume anyone has it easier than me.

Monday, 5 August 2013

"I'm Glad You Have Arthritis."

Around this time last year, I was very close with someone. We've since have gone our separate ways. But whilst I was with this person, I heard some interesting things. There is one conversation in particular that I will probably never forget. It wasn't exactly 'kind,' for me at least. These are several quotes from that conversation that still stand bright in my memory.

"I'm kind of glad you have arthritis..."

Excuse me?!

"... Because it feels like I'm helping someone."

Am I a charity or something? Is that the only reason they were friends with me, because it was like community service?

"I just want to go out and help people, which is why I feel so good about helping you: I'm making a difference."

Are you? I didn't notice. Especially the time I really needed assistance in carrying a heavy object, but did it alone (with lots of struggle). Or when I couldn't unlock the restraint on a roller coaster and the attendant had to help me (to the nice attendant- thank you for telling everyone to stop laughing at me when you unlocked the belt).

Honestly, I don't understand people at times. I don't know if this person was trying to make me feel like he was there for me, or if he was trying to make himself feel like a better person. Sometimes people say the dumbest things in an attempt to make us try and feel like they understand. This really doesn't feel like one of those times. Maybe I took it the wrong way or something. I don't know. All I know is that I felt bad when he said it back then, and I laugh about it now.