The Girl With Arthritis

A good portion of my year so far has been spent at amusement parks. I go so often that I have already paid off my annual pass to my favourite one. I thought it might be a nice idea to share some amusement park wisdom as the summer has begun. Roller coasters affect people different. I can go on rides with large hills and loops- actually those are one of my favourite kind. Somehow the forces don't bother my neck or back, but they do for others. Don't do anything you don't feel comfortable with, but you do have to try things to know. Rides that go backwards, especially upside down, will put a lot of pressure on your neck and back. I don't recommend them if you have any type of problems with your neck, back or shoulders. You would be surprised how much force puts pressure on you as you go backwards whilst upside down: I was very afraid I would get a neck flare right after I rode my first and last backwards and upside down coaster. Be wary of rides that have no neck su...

Recently I was asked (by the lovely Ms. Rainbow ) if since I got arthritis at a young age, did I have a transition period of getting sick or did I always accept? In all honesty, it was a very long, ongoing transition. When I was very little, I wasn't 'normal' like other kids were: I tired very quickly, my leg dragged, I was very stiff and I always remembered being achy. But I didn't know that wasn't normal until I was eight years old. At eight years, I had what I still call the 'worst flare of my life.' I could barely move and was in hospital for about a week and a half (I'm still a little fuzzy about what went on at that point). I had an extremely high fever and severe hip pain, and all my scans showed inflamed fluid on my joint. Unfortunately 'the greatest children's hospital in the nation' sent me home and said it was viral arthritis, and never followed up. Afterward, my joint pain was much worse in my hips- in fact, they were the only j...

"If you actually have arthritis, doesn't it hurt to walk?" That was how the conversation went. I didn't know it at the time, but I had opened up a Pandora's box. Someone ( I'm not disclosing this persons name or relation to me) had just asked me about having arthritis: They heard me mentioning it to someone else. I'm usually honest about my diagnosis, so I told them I live with arthritis caused by the immune system. They asked how I deal with it, so I told them I take immunosuppressants and try to stay active. This person is very pushy and nosy, and I suspect a bit overdramatic. They continued to question me, as if making me prove something. They said, "so the pain isn't all the time?" And I said, "No, it's constant." I was asked, "but if you actually have arthritis, doesn't it hurt to walk?" And I said, "Yes." "Then why...?" "Because either I walk or I live in a wheelchair."...

What doctors always forget to say to you when you get a diagnosis is, "congratulations, it's a chronic illness." They never mention how ongoing many diseases really are and just focus on the short term. It's often up to you to learn about what's going on inside of you, and trust me when I tell you Google is a scary place to go, especially at one am when you're panicked about what's happening. A word of advice: Google will stop being your friend if you are A)panicked, B) tired, or C) a horrible combination of both.  A lot of people don't realise that they have chronic illnesses, and become frustrated when they are not cured overnight or at least have sufficent symptom relief in the matter of a few weeks. When it comes to months of little to no improvement or even further progression, people can become agitated, anxious and downright depressed. It's a hard pill to swallow, which is why many people with chronic illnesses go through the five stages o...

Some nights I go to bed and promise myself that in the morning I am going to get up and go out and get things done. But I often break that promise. There are mornings on my days off that I do nothing but lie in bed. It feels very lazy, and sometimes I feel guilty. But it's also very peaceful. I can hear the day starting all around me. I feel my joints gently throb. Pain isn't always something that makes you suffer. In fact, it can be the only thing that lets you know you are alive when the world is cold and numb. From my bed I can look out the window and see the world go by. It doesn't go by without me, though it can feel it. I'm still a part of it, but today I choice to watch peacefully as I rest so later I can join outside. People often call me a homebody. However, this is far from true: I really love to be out and about. There are times I dread coming home, wishing I had time for one last adventure. But it would be no fair to my body to overwork it. I need to rest....

Where have I been? Right here! I've never left, I've just been less active. I haven't participated in social media nearly as much or even written comments on some of my favourite blogs. If you emailed me, I still responded like usual. But I'm not up for communication at the moment. I haven't for a long time. I'm not tired of all the lovely people on and off the internet. In fact, I miss them a lot. I just haven't felt up to writing. I haven't even been texting with my best friends as often. Even to type is tiring and all I want to do is lie down and stare at the screen. But this isn't even bringing my energy back. I force myself to take a long walk at least once a week (but usually more) but it hasn't helped (nor made it worse so I continue to get out for a minute). I really enjoy being out too, I wander through stores and bring home coffee for my mum and I. But afterward, I need to relax and I end up lying down for the rest of the day and so...

To Students Pursuing Medicine (be it nursing, doctoring or otherwise), I think the choice to go into this field is great- you must really have dedication and care for others. That's wonderful, and I say that very lovingly, not sarcastically. I'm even a little envious of you because I fancied the idea of becoming a medical professional when I was younger and still have a medical sweet tooth- I love the reality shows set in hospitals. I know you can do it, and you will be great in what you pursue. But, as a professional patient, I ask for you to learn some things and try others. I want you to try and put yourself in your patient's shoes. Think of how you would react in certain situations- and no, you would probably not be as calm as you imagine. I know it's easier to separate yourself from your patients, but do this at least to understand the way your patient reacts to your words. There are tears, held back sorrow and anger, frustration, guilt, confusion and feeling l...