The Girl With Arthritis

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it. It was in January that an academic society I belong to began preparing to induct several ne...

Dear Jenni , I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me. Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying...

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....