The Girl With Arthritis

It's been a long time since I've last updated. I don't want to sugar coat it; the past few months were extremely difficult. Though I'm hesitant to say it was the worst period of my life, it was definitely the most exhausting in all respects- physically, mentally, and emotionally. While there were many things going on that were extremely demanding, I wasn't exhausted solely due to those stresses. Rather, it was because I was very ill. And I owe it to many people -the people in my life and to my readers- to explain why I was absent and very much not myself for a few months. In July, the medication (Sulfasalazine) I had began in May was causing harmful side effects, so I began taking Plaquenil. I was very hopeful that this would be the treatment that would bring me to remission in a year or two. It seemed to be successful for many of my friends, so why not me? Plaquenil takes a very long time to work, so I wasn't surprised I hadn't felt any benefits by Au...

I've been terrible at updating lately. It's not even that I have nothing to say, because that is certainly not the case at all. I have lots of stuff I've been writing that I cannot wait to share. However, the past two months have been extremely intense unfortunately. September and October put me under extreme academic pressure (there came a point I started skipping meals to do homework), and in addition to dealing with arthritis, medicine side effects, and just attempting to have a social life, the blog suffered. I suffered too. I'm very burnt out at the moment. Though I still truly do love my major and the work I am doing, I am at the point where it's pulling teeth to get it done. So forgive me for a while whilst I get back on track. I promise I will let you know how I am doing when I can, but for now I need to focus on me. And if you want to know how Arthur is treating me, I'll give you a hint: he's kicking my butt.

Since last updating, I've been taken off of sulfasalazine as it caused too many side effects to justify continuation. I experienced extreme fatigue, and as a result was sleeping almost twelve hours a day with no relief of exhaustion. In addition, I lost my appetite and barely ate at all. I've been off of that for a few weeks now, and I'm feeling much better. My appetite still isn't what it was, but it should start coming back soon. So now I'm on Plaquenil, which is one my last options before considering biologics again. Despite my great reaction to biologics in the past, my rheumatologist insists that we try other treatments first. This is somewhat due to how powerful they are, but also to whether they are a good option for me at this point. My rheumatologist, who I've been seeing since April, has taken note of the very active arthritis in my joints. However, what is confusing her is that for the most part, my joints are not eroded. If I was only recentl...

When I was little, I liked to pretend I was a superhero. Even now, I haven't quite given up that game. Granted, I don't tie a sheet around my neck and jump on my bed as often as I once did. Now, I pretend that I have superhuman strength. I love to zoom here and there, do a hundred things at once, and never need to stop, just like a superhero. But I've noticed that it's not just superheros who can do all that: It's young people too. In an attempt to keep up with my peers, I pretend I'm extremely strong and can fly. They have boundless energy and are constantly in motion. And why wouldn't they? They're in their prime. And supposedly, I am as well. And in order to act it, I pretend I am that strong. And I do well until my friends go home- after that, I make a crash landing. But at least I crash in glory. This past semester, I really pushed it. The mornings started early in lectures or the library, the afternoons involved at least a half hour walk and as...

I don't normally promote much on this blog, but this is too great not to share. If you've been on my Facebook page, you've seen me share about the Ride for Lyme. But I really want you to know what it's all about, mostly because both Lyme and the Ride for Lyme have been part of my life. Lyme disease is a devastating disease  to have. Even in countries with the greatest of medical care, it can often go undetected and/or under treated. I know many people who are battling Lyme, and it's extremely difficult to treat. A lot of people struggle to be diagnosed in a timely manner, and when they are treated they aren't treated appropriately. It's absolutely life changing in the worst possible way. The Canadian Health Department doesn't recognize Lyme, nor will they treat it. In 2011, Adeline Nohara was diagnosed with Lyme by an American doctor after 18 months of suffering. Today, she is still suffering because of Lyme. In a response to their friend's suffe...

Alright. So, I know one of my past posts made it very clear that I was not going to see another rheumatologist anytime soon. I made it clear that it was not worth it at all to me, and I would not be seeing a new one until I was completely desperate. I saw a new rheumatologist a few weeks ago. As my academic semester winded down, my body began to flare. My feet are giving me the most trouble, and wearing shoes has become a new form of torture. But all my joints are beginning to ache a lot and swell. I've found myself stuck in a few locations because I was too tired and sore to move. Additionally, I had to leave class twice as well, once just to ice my foot (I've rarely resorted to ice). So, I made an appointment with a rheumatologist: an adult rheumatologist, who works at the same hospital (just not in the pediatric wing). She received wonderful reviews online, so I thought I would take the plunge as I became desperate. Her reviews did not deceive either; she was very nic...

When I left home to go study in the fall, I moved into a new suite. I hung up a cork board with a beautiful weaved pattern on my wall, over my desk. Originally, I came with a few things to hang on it, but nothing overwhelming: there were two tickets from a museum, strips from a photo booth, a picture I drew, a bracelet from a hospital visit that said 'Fall Risk,' and three photographs. It was very bare, but nice. I decided that more would be posted over the year, but nothing could be taken down (minus calendars and reminders). My board is nearly full, and it reminds me of how much I've gained as a person. Once you get past the menu for Chinese take away, an events calendar, and a map of how to measure the bones, it's amazing what small things have been added. Take, for example, a postcard from a trip I took last semester. That weekend opened my eyes to how wonderful life is and the true joy of friendship: I never want to forget it. Or all the tickets from the museums ...

I'm going to be quite frank: I haven't seen a rheumatologist since October, and I don't intend to again for a while. I have the opportunity to call and make an appointment and probably get one in two weeks or so, but I've chosen not to.  I know you can't predict the future, but I think I have clear judgement when I say it's not worth the pain, frustration and guilt. The last two doctors I've seen have told me I'm completely fine and whatever pain I have is normal, aging muscle strain or in my head, but probably both. Although I did not realise that the pain of aging begins its onset before ripe age of 18, I will take it. Nobody who can really help me cares. And that's okay. My arthritis is honestly not as bad as most people's. Sure, I hurt. But I'm not in a wheelchair, nor have I ever needed pred. I walk a lot, go to classes, hang out with friends, attend religious services and studies, and just explore my beautiful city and that is w...

I've been back from that weekend away for two weeks now, but I can tell you I can still feel the positive effects it had. I really got closer with my friends and new friends. Having just gotten back to classes a few weeks ago, it was a well deserved rest. Not that I did much resting, anyway. The place we stayed near was by a beach. Though we did visit it, none of us could go swimming because of the risk of hypothermia (much to the disappointment of the guys). None the less it was very pretty, and we even got to skip some stones before heading back (there were a lot of those).   But we enjoyed the cold, snowy weather and made the very best of it. Including building a snowman! We tried using a banana for the nose, but that didn't quite work. Instead, we used Oreos, Gold Fish and other snacks. We also slid down hills of snow, had snow ball fights and made forts. You wouldn't think we're legal adults, would you?    

I'm terrible at posting lately. I don't have much to say medically that is much different from what it was a few weeks ago. I can't bend my elbows for too long before they get stiff and painful. I cannot touch my chin to my chest. My muscles are very tense. I'd like to slice my heels off. It's the basic life of a psoriatic arthritis patient. But, I'm very excited for this coming weekend. I'm going away with a large group, just getting away from it all about two hours away. We're going to the ocean, and some of my friends even plan to take a quick swim! I will be safely on the side watching though- don't want my fingers going completely blue, the nails are enough! I really need this weekend trip to get away and clear my head. I'm hoping my body will feel better as my soul does. Anyway, pictures will be coming!

I can sum up my last two visits with doctors in one simple phrase: Doctors are idiots.   They are and you cannot convince me otherwise. At the moment, I've completely had it with doctors. For people who study for years, they aren't good at understanding the things I tell them. At the moment I'd even call them hypocrites for claiming to wanting to help people.   With a rheumatologist stripping me of Enbrel and rheumatologic care, I recently saw my GP to see where to go next. She was of very little help. My rheumatologist actually sent her a note of his reasoning to stop Enbrel, and she agreed. She agreed, "Your hips are doing well and there's no need of keep you on this very strong medication." I said, "My hips are doing well, but I wish he took into consideration my other joints." She went on the emphasis my hips are doing well, and was not very concerned that I don't feel good. Actually, she was not concerned at all.   She's a...