The Girl With Arthritis

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 gre...

Now, I'm not a doctor and I'm not telling you what you can or should do. Don't take it to heart. Talk to your doctor. "Can I still drink with a chronic illness?" A question muttered in many different forms by many different people. And the answer is almost always yes. In the case of arthritis, you certainly can. It's not so much the disease we worry about alcohol affecting as much as the medications. Many medications do carry risks when it comes to alcohol. NSAIDs are usually safe to drink in moderation, of course ask your doctor first. DMARDs like methotrexate are popular in treatment. Some doctors tell you that it's fine to drink, but to limit it. Others tell you to avoid it like the plague. It's mostly concern to protect your liver and kidneys. With biologics, it may be the same story: you might be told you can drink, you might not. Only your doctor knows what is best for you. Me personally? Well, I was about twelve when I started methotrexate a...

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 hea...

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...

Yesterday I was talking with a friend who was trying Methotrexate for the first time. She told me how tired it made her feel and how it hurt. We both agreed that it would probably take a while for her to adjust to it. That's when I said, "The thing about medicines is that they are like shoes: they're painful to wear until you break them in." It's true in some cases. Sometimes a medicine will cause very ongoing side effects. Other times, they'll gradually (or even rapidly) lessen or even disappear. I went through about three weeks of horrid side effects with Enbrel before they began to go away. Like a good pair of shoes, Enbrel hurt for a minute but then became very comfortable and worked for my benefit. And in my life, I've tried too many 'ill fitting shoes.' And, like shoes, medicines are necessary. Sure, we could definitely walk around without shoes but it would be rather painful on sharp rocks or slippery on some floors. Many shops and place...

I've been taking Enbrel for about five months now. I wish we had known how wonderfully it would work for me so I could've switched earlier. I think the biggest thing about Enbrel that most people don't like is that you have to get it through a shot. I know I didn't like this at first, as I read it burnt and stung terribly. However, five months in, I can't see life without it. I now present some of my wisdom. 1. When you are washing your hands before, make sure to run them under warm water for a minute. It's not only hygenic, but cold hands pinching some skin on your stomach or thigh is not comfortable at all. 2. If you use the pen and recieve a lot of pain from it, consider switching to the regular syringe. That way, you can control what force the needle goes in and how quickly the medicine is injected. Believe me, it's not that hard to learn to do correctly. 3. Remember, you don't have to rush. If you feel burning or stinging while injecting the...

It's an Enbrel night. And a little while ago I got up, gave myself a shot, watched some YouTube videos and the wrote this. Needles aren't a big deal for me anymore. They really never have been, though I could never have imagined in a million years that I could possibly give myself them. I used to feel very bad for people who do. But I do know now that its just a part of taking care of yourself. But, naturally, it is a big deal. It's sad that people have to give themselves injections. And people will tend to be horrified when you say that you do. But I wouldn't let that put anyone off from trying a medicine that requires a needle. Enbrel terrified me a lot at first, not just because of the needle but that was part of it. Now, I can't imagine not having it! It's helped me so much: though I still get pain, it's not as bad as it was before. It's helped me loosen up a lot too. Of course, I still have a long way to go. But it's worth it. Even giving my...

Dear All Medical Conditions, I am not a sufferer of arthritis. Arthritis is a sufferer of me. And this is a warning to all other diseases that you should not come near me. I'm a rather bad patient: I don't have time for you. I will take care of you, but I will not cater to you: We are not doing what you want when, you want because we will be far to busy doing what I want, when I  want. Annoying me does not help as I'm a firm believer in the silent treatment. Also, I hope you like art. Because you will sit up with me all night while I finish my art projects. These nights really annoy Arthur, and he likes to try and pull me away from my work. Unfortunately for him, I don't give in because I like art way more than I like him. And that is no different for you. If that doesn't scare you away, I will find ways to make you leave: Medicine has really come a long way in this modern age. If that doesn't work, I have ways of making you behave. Arthur is currentl...

I'm what they call, a 'speed reader.' And about two months ago, my friend let me borrow this book by one of my favourite authors. I looked at the size of it and figured it would be easy to finish. I still haven't finished it. It's not that the book is challenging, it's that I literally cannot pull myself to read it. I only very recently have picked it up and enjoyed reading it. I'm halfway and I'm determined to finish it. I want to know what happens. Or at least I keep telling myself that. You see, I keep telling myself I want to finish it. I know in life there are going to be things I don't want to do at all, but I'm going to have to finish anyway. It's hard when you have to do  something that seems unnecessary or unpleasant, but it's in completing these tasks we tend to feel most satisfied. Worrying about a task seems to take more energy than doing it and then never having to think about it again. And to a person who has fatigue from ...

So, as you may know I take Enbrel twice a week. Yes, I do inject it myself, typically in my stomach. And I've perfected my needle poke ability over the past few months. I learnt very quickly to run my hands under warm water for a few minutes after washing them before I get started. Not only is this good hygiene, but so I won't go 'Ah!' when I touch my stomach, as has happened when I have cold hands. But it's pretty funny to watch my reaction to touching my stomach with cold hands. :)

Here's to a Happy New Year! Wishing you a good year. It's come to my attention that this year hasn't really ended on the right foot, so I propose that 2013 become a peaceful year. Just a proposal, of course. Naturally, it's at this point in a post that I would tell you the current status of my health. Rather than writing of stiffness, pain and fighting through it, I'm rather happy to announce that despite the stiffness, pain and fighting through it, I'm doing quite well. Granted, I suppose the stiffness, pain and fighting isn't exactly considered 'doing quite well,' but it's much better than usual. I truly wish I could have started Enbrel earlier, if I had known what a good impact it would have on my life. Here's to starting a new year where chronical illness will be conquered by all.

I'm extremely relieved that the week is over, it has been quite long. I've been working on homework assignments all week long, often late into night. But not only that, I've had quite a few embarassing blunders that I'm ready to forget all about. Anyway I'm quite sore from the stress and tension lately. I simply can't wait to relax. I don't have much to talk about medically as I feel like I've been focusing too much on that. Though, I'd like to say that I am doing great on Enbrel and have had no problems in doing injections. Besides getting over  that fact that I'm injecting myself. Also I'd like to end off this post with a little wisdom: Don't talk about people behind their backs. Even if it makes you feel better in the short term, it'll come back to bite you in the long run and anyway, there is a very good chance that person will find out. Especially if it's a lie made to look the person look bad.

My visit to the hospital yesterday was a rather good one, I'd say. I'd like to start off saying that Enbrel has definitely helped, and it showed in the fact I showed more range of motion just about everywhere and I have slight pain reduction. Two great, promising things. A 5% improvement in just a few weeks is great hope. Sometimes people tell me that hospitals as depressing. I don't really look at doctors and hospitals to be something to be depressed about. I rather like my doctors, nurses (most of them anyway), technicians, and the other patients and families I meet. We laugh an awful lot and have great conversations. I know getting your blood drawn is unpleasant, but it doesn't have to be completely unpleasant: A great phlebotomist and conversation can really make it 95% better! But anyway, my mum and I tried a new restaurant afterward. Even though we hated it, it was great that we got to go out and try something different. We did some shopping and had a great ...

I apologise for being away for so long, I've had a very long and busy week between school, school work , a family gathering and also seeing a film I've wanted to see for quite a while with one of my best friends. At the moment, I have many Enbrel side effects including headaches and fatigue. In fact I fell asleep after school, of which I never do unless I'm extremely ill. Tonight I have worked on my own clothing design for a shirt. This is completely and utterly unnecessary work. The reason I am doing it is because a girl in my class took credit for an idea I came up with and drawings I did last year. She didn't mention it was my idea, she took all the credit and continued to saying that she was the only person who cared. I am not letting her win this. I am bringing all my former drafts to class as well as my NEW ideas, which in my mind are brillant. I'm not letting her get away with this. If we're not allowed to cheat on tests, why should we be allowed to che...

I've beem doing my own Enbrel injections lately at the doctor's office, but tonight I did it at home. I can't say it was my best Enbrel experience but it definatly was a success. I actually recorded it on my phone to show friends tomorrow before school, so I'm rather excited to see their reactions as some are interested and others usually grossed out. I HAVE gotten side effects on Enbrel: A lot of fatigue and headaches at first that are beginning to lessen, as well as some general weakness and muscle pain. Also the first few days I got moderate muscle cramps in my feet, but it did not last. Nothing out of the ordinary, hopefully they will lessen the longer I take Enbrel. On a positive note, I've been very busy the past week and keeping myself in great spirits with lots of things planned for the coming months. Nothing is better for a young person than looking forward and taking control of their future. :)

My last Enbrel injection was one I certainly will never forget: I injected myself with it for the first time. Actually, I injected my own needle for the first time in my life. It was nerve wracking but I had my mum and nurse right there, and I had experienced Enbrel before. I knew exactly what to do as I had a bit of training and the needle is actually very small. I used my stomach (my current favourite injection spot). I stood for a minute pondering if I was really ready for this. But in a quick moment of bravery, I used 'the swift, dagger like motion' I was taught. When I realised what I had done, I got nervous and started shaking a little. I injected Enbrel slowly, as it is known to burn and last time I got a warm feeling. I didn't feel  a thing: I didn't even have any pain from inserting the needle. What did hurt was taking it out as my hand shook the tiniest bit, but no injury so I was fine. Just a slight pain. The nurse (who knows me very well) was so proud, as...

Yesterday I started Enbrel. I have to say, it wasn't as bad as I thought. The needle was very short and skinny, and there wasn't much Enbrel to inject. The nurse allowed me to try and inject myself with her supervision. I got the skin ready and I was so close to injecting myself when I chickened out. The nurse said it really looked like I would have though. She injected it for me, which has given me a lot of confidence for next time as now I know what discomfort to expect. The needle itself did not hurt, and the nurse injected it very slowly so rather than a burning feeling a lot of people report, I got a very warm sensation that was somewhat uncomfortable but only last a few minutes. Honestly, nothing to get worked up over. Hopefully Enbrel will help, as the last few nights have been very painful for me, and currently morning pain and stiffness is at it's worse. It will take a while to help, but I'm truly hoping that Enbrel will help.

I'm going to start Enbrel this week. Though I said before I was quite positive about taking Enbrel, as the actual happening of it comes closer and closer I've been getting nervous. I don't think I'm as nervous about the side effects as I am if it hurts. I admit it to the world: I am a teenager who has had arthritis for their whole life, and yet I'm afriad of a little needle -that might make everything better- being a bit painful. Kind of pathetic, in my opinion. But in a way I'm excited. I want to try and learn to inject Enbrel myself (Try to learn, no promises), and I think not only is that a great idea but I think it's cool. I mean, call me crazy, but in my opinon I think it's impressive when someone can inject themselves [with perscribed medicines/treatments].

Today's hospital visit was mostly great. I found that any crystals once in my kidneys had flushed so my kidneys are fine. Also I was prescribed Enbrel to treat my psoriatic arthritis, which I am positive about. My rhuematologist and neprhologist (Kidney doctor) have been working very close together to ensure my kidneys will not be damaged with all the medicines. I'm very grateful to have two very caring doctors. However, there were rather unhappy moments. This morning I needed a kideny ultrasound, which seemed to be fine until the technican began to appear uneasy. He left for a moment and came back with two doctors, who were all worried about something not appearing healthy. It's a very scary and vulnerable moment to have several doctors stare at your results, practically ignoring you because whatever is on the screen is scaring them beyond belief. It seemed to be nothing, thankfully. Another rather unhappy time was when my kidney doctor immediately had me seen by anoth...

Tomorrow I shall leave my school and friends. For I am going to the hospital. Again. It's actually a day filled with various appointments, so hopefully I'll bring nothing but very good news. While I'm seeing my usual rheumatologist, I'm also seeing my kidney specialist to determine correct treatments for my current kidney affliction (Calcium Crystals). I'm trying to stay positive that everything will be just fine. Also tomorrow I may be put on Enbrel, an immune surpressant. I'm nervous as some of the side effects don't seem too fun. One risk while taking Enbrel is a higher cancer risk, however this doesn't bother me as much as the higher chance of appendicitis (which requires an emergency operation to remove). I'm not so much worried about actually getting appendicitis and being in a lot of pain. More so, I've been laughing and joking with my friends saying I'll get it while walkiing in a crowded corridor at school and people will have ...