Sunday, 1 March 2015

The Cork Board List

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 went to, where I've learned so much and have gone just to contemplate my life amongst history, art and science. There's a name tag with my name spelt 'Elizabell,' and I keep it not only for fun but to remember how many friends I made that night. There's a black and white photo of a stained glass window, and a small token shaped in a baby's outfit commemorating when my cousin welcomed his first daughter this October. There's famous works in the form of postcards and small notes of encouragement.

But I think one of my favorite things is a small list I keep on the side. It does not contain things to do or reminders, but the names of people. This was a practice recommended to me in September. The list of names is people who you would suffer for. So on those nights you truly do not want to continue your work and studies, the nights you just want to throw in the towel and quit, you look at the list and say "I do not want to continue for me right now, but I'm going to do it for them." You don't really put a lot of people on it, just a few. And it can be anyone, like God or My Future Child. I highly recommend it. Sometimes it sounds appealing to just pack up, go home and get a secretary job. Even though it's not the best thing for me, it's easier to hurt yourself than it is to hurt the one's you love. So, that list keeps me going some days. I highly recommend it.

Tuesday, 24 February 2015

I'm Worn

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 way more than most people with arthritis can say. Of course I want to slice my heels off and feel like my spine is actually a metal rod. But symptoms don't matter.

Proof matters. And I just don't have all too much of it at all. A few nails are in psoriatic remission, my jaw is damaged, I'm very stiff and sometimes I swell a little bit (I almost never notice), but what more do I have? My blood tests are clean, my scans are clear (as far as I know) and I am able to move without severe pain. I would love to be cared for. I would love to know where my kidney pain and swelling comes from. But I don't- because nothing showed up, even on the most invasive of tests.

I'm hurting. I admit that completely. I'm hurting and little old ladies sometimes
Walk faster than me. But I'm just not bad enough to be cared for. I have no evidence, and doctors refuse to believe in what they cannot see clearly. 

I don't really want it to be this way. Sometimes I'm really close to calling to schedule an appointment with a new doctor, but I'm scared. Sometimes I'm really close to asking my Bible study to include me in our prayer intentions, but praying for the homeless is a better cause. Sometimes I don't feel like I can get out of bed in the morning, and I would like to lie in and moan about how bad I feel: but that's a reality for so many other people and it would be selfish of me. And really, when people complain about how sore they are after working out or telling me that I shouldn't be so weak, I'd really like to rip their head off, but that would probably land me in prison. 

Excuses, excuses. I know. Look at all these wonderful excuses. There are always going to be so many of them and so many reasons to use them. Does that mean I should? No. And shouldn't I follow my own advice and fight and advocate for myself? Yes. And isn't arthritis always serious, and to never give up in finding treatment and respect as a patient? Absolutely. I've thought of all these things, and I preach them.

I know my risks. And honestly, maybe the risks are worth it: A flare is obvious proof, right? Nope, but I feel like then it will be worth a try. I've had episodes of being unable to move my neck and shoulder, and maybe that will do the trick. Until then, I'm doing this by myself. I don't want it to be this way, but I don't see any other way it can be that won't completely destroy me. I'm worn. I'm dragging. All I want is to sleep away the tiredness I carry in my heart, but no amount of rest will heal it's weariness. 

Thursday, 19 February 2015

Back Again

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?

Thursday, 5 February 2015


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!

Sunday, 4 January 2015

New Directions

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 doctor- shouldn't she be concerned with what damage is being done without treatment?! Shouldn't the rheumatologist?! Both agree I have autoimmune arthritis (though they battle between psoriatic and rheumatoid), do they not realize those are diseases which need to be treated? My TMJ was damaged in the course of a year, even though I was still taking methotrexate. It didn't even hurt that much- now that it's swelling without Enbrel, I'm terrified to think of what's going on now.
The fact of the matter is that I am not, nor have I ever, interested in pain relief medication. I do not want it- I will not take it, even when it is prescribed to me. What I want is treatment. I don't care if the treatment doesn't take away all the pain, I just want to know I am doing the best thing to prevent damage later on.
Only because I asked, my GP referred me to another rheumatologist. I was extremely hesitant to schedule an appointment with him. I'm tired and don't want to be brushed off once again. Somehow, living on a diet of ibuprofen with a wardrobe of heating pad is more appealing than dealing with another doctor. I knew I'd have to go eventually, and I would once I got so bad they couldn't ignore it. When I told a good friend of mine this, she urged me to schedule an appointment because it is important to be seen. And she also encouraged me to research him too.
I'm so glad I did my homework because I found this rheumatologist is not popular at all. Former patients claimed he's said a few choice words to them like 'just take an aspirin,' 'stick your hands in a bowl of hot water,' and 'go live in a warmer climate.' Plus, he barely gave his patients time. Rest assured, I am not seeing him. I am not going to set myself up to be brushed off by doctors again.
Now, with some research under my belt, I decided on trying a different rheumatologist. She actually works for the hospital I already go to, so I won't have to go somewhere completely alien to me. Just the idea of being in the same hospital is already comforting. From what I read she is very good and caring to her patients. But what completely convinced me to schedule an appointment is that she is extremely experienced with young adults who's arthritis is juvenile onset, and often takes the cases of patients transferring from pediatric care.
So, no date is set yet but will soon. I know every experience is different, but I hope I have a positive experience like the other's I've read about. I'm praying she will help.

I would like to add a disclaimer on the bottom of this post that I do not, in fact, think all doctors are idiots. I'm just incredibly frustrated at the moment with the idiot doctor I had to deal with. Seriously! What person takes away a good thing?! "Yeah, let's strip Elizabeth of medication that has made her capable of living a full life. Especially now that she's in university. In the city. Walking everywhere. With lots of new friends she likes to go out with. And working with kids during the week. And doing lots of homework at night. Yeah, that's a great idea."

Monday, 29 December 2014

Three Months Post Enbrel

I hope everyone had a great Christmas. I certainly did.

Though I've had so many new experiences in the past few months, I don't feel as if I should write about them until I address what's gone on healthwise.

 With the last rheumatologist I saw telling me I was in perfect remission and perhaps the pain was just normal muscle ache, I've been a little confused. I even began to question whether the pain I've felt is real or not. Maybe I am normal and I have a very low pain threshold.

 But with my Enbrel (which kept my joints very well under control) being discontinued, my body has steadily given more 'proof' that it is indeed not in my head. I never use to notice swelling on my joints, so I'm not sure if I ever did swell before, but I certainly swell now. My ankles are now cankles. My jaw swells a little as well- my professor once excused me from lecture because she noticed it and didn't want my jaw to suffer in class. Pain in my joints has become sharper more frequently now. I notice myself limiting movements in my shoulders, and my elbows become very stiff and painful quickly. One time I wanted to break down crying it hurt so much. Drawing with an easel has become challenging, but I have found new ways of propping my arms up. On top of all of that, I'm so much more tired.

To sum it up, I just don't feel good. I don't want to go shopping. I don't want to climb the stairs. I don't want to entertain company. I just want to lie down and sleep and be warm.

I try not to talk about this much and just suck it up. I feel bad because lately I'm often in a bad mood. It's just that when you feel like your back is a metal rod, it's hard to act pleasant. I'm guilty that I've put others in a bad mood because I've been bitter. It's hard to tell (or warn) someone that you're hurting, because we're all hurting. But honestly, I just want to scream out that I don't feel good.

Wednesday, 17 December 2014

Grown Up

It's been a little while since I last posted. Sorry about that, but I've been very busy!

My life has been non-stop since September when I went off to university. Yes, your little girl with arthritis is all grown up! Sort of. Kind of. Not really. Regardless, my life has been flipped upside down and I couldn't be happier- I'm studying at a wonderful school, surrounded by wonderful people in a wonderful city. It's wonderful. I've enjoyed the past few months very much, and am excited to return again after Christmas.

I've only just returned home for Christmas the other day, and thankfully have a few weeks before my next semester. Though I love my busy life, I need time to unwind and relax. Quite a lot has happened, lots of great things but a few other things that are not so great. One of them was my rheumatologist leaving to work at another hospital.

My new rheumatologist shred me to pieces. In only five minutes he told me I was in remission because my hips were so well controlled. He told me that whatever other pain I have is in my head. Then he did the unspeakable: He decided to stop my Enbrel. In a matter of five minutes, this man decided to destroy my life.

I've been fine for the past few weeks thankfully. Once you've begun Enbrel and had a positive response to it (like I had), you can usually retain you're current state for a few weeks before the arthritis flares again. The past two weeks I've been taking ibuprofen to control the inflammation and pain. Unfortunately, it's not ideal with my kidneys but it's the only choice I've had. Especially as my tramadol does not reduce inflammation, and I've found lately gives me awful side effects like dizziness and anxiousness.

But its really caught up to me now, six weeks Enbrel free. Everything hurts or is tender, even joints that didn't hurt so much before. I can now add in shoulders and elbows onto the list of joints that hurt. I've really lost my appetite, and I'm getting the flank pain I got when my kidneys weren't happy.

With Christmas coming, I'm trying to remain positive. Though I mainly hung out on my couch today, tomorrow I would like to clean, wrap some presents and make some cookies. I don't really want to concern anyone at the moment, so I've been quiet and haven't talked about how I really feel. Though I suppose this post ruined that effort with my mother (hi Mum), it just feels good to let it out. Here's to a better tomorrow.