Wednesday, 17 December 2014

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, you're 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.

Tuesday, 28 October 2014

At The Moment

I'm more than just a little confused right now. Things change very quickly, and often they are things completely out of our power.

I would like to start off that in almost every respect, life is good. And I don't mean 'good' like when someone asks you how your day went and 'good' just pops out: I mean it is good. The powerful good. My classes are amazing, my friends are fantastic, my spiritual side is on fire, and I've even lost some weight. Life is good. There is a lot of joy in my life right now and I'm enjoying the fast pace of it all. I only wish it would slow down so I could savor every single second of it.

But it's a confusing time health wise. Actually, it's been more like an emotional rollercoaster. Some things have happened that I only imagined would happen in nightmare or horror movies (Like, the spoonie kind). It's why I haven't posted lately. I just don't know what to write and tell you because frankly I don't know what to tell myself. And I'm not going to try to explain it to you until I can explain it to myself.

Even in the confusion, there are things I know for certain and I'd like to let you know them. It's that I'm doing fine right now, even with the seasons changing I'm holding up alright. I am walking more than I ever have before, and the exercise is helping. Not all the time, but I can certainly see I've gained some strength and endurance. But the most important thing is I have the support of many people right now. There are so many who have shown a great deal of caring and kindness to me when I needed it most. I don't think they know how much it really means to me that they care so much. And of course, always having my mum to talk and defend me is always a blessing.

Thursday, 25 September 2014

The Young Empathy

I've touched base upon this topic before, but I would like to again, just because I find it fascinating.

Since I was very young, I've gotten along better with people who were older than me. It wasn't until I was about fifteen that I began to get along with my peers. Regardless, I've had the ability to talk with adults and preferred the company of a more mature person than people of my age (though not always). But the one touchy topic I hate to bring up with adults, especially older adults, is my psoriatic arthritis. Believe it or not, I prefer telling other young people about it rather than older adults.

Of course, this isn't always the case, but a good portion of the times. Adults often compare me to themselves, who are beginning to wake up with an achy back or their hands aren't what they use to be. More often than I care to admit, they'll begin to compete with me to see who has it worse; I like to let them win so they feel special. Sometimes they just say I'm too young, or they assume it's not so bad because of my age. I even get brushed off because I sound like a little kid trying to sound grown up. Their reactions to my medicines are another story completely. In rare cases,  I've had adults pick on me because of the way I'd move. I've gotten a whole slew of reactions from adults, and though many are very nice, there are times I wish I didn't say anything at all. Especially because the arthritis tends to become my identity to them.

Telling people my own age has usually reared better results. Not as much when I was younger than about fifteen, but even then it usually was a better reaction than the gym teacher who told me I have a stupid run. I've gotten people who questioned or didn't believe me, but not a lot to make a difference. Most people just ask me if I'm doing okay, or even just say "wow, I didn't know that" and will ask me how bad is it or to explain. Sometimes, people even have siblings or friends with arthritis and will tell me that. Recently, people seem to really care when I tell them I'm chronically ill, especially because the times people find out are often when I'm limping or need a rest. But it's often something they don't bring up much yet don't forget- they know who I am, not my disease.

I don't know why I get the results that I do- most would think it would be the younger people who are less empathetic. But I'd like to also mention there are a lot of adults who care a lot and lots of young people who really don't care at all. I'm just mentioning am odd pattern.


Thursday, 18 September 2014

I'm Happy

There hasn't been any commotion here on the blog, or on any of my social media. Normally it's when I'm not doing well that I don't write because it's harder to concentrate and I save my spoons for what absolutely must be done. But as of the past weeks, it's actually because I'm doing very well. In fact, the past few weeks have been some of the best I've ever had.

With the start of a new school year came lots of changes, but I certainly embraced them rather than tried to keep things as they were: Change is very good, and sometimes you have to be the change you want. There have been lots of nice things that have come my way lately, which I've been very fortunate for. I'm walking and moving more than in the past, and I know I am stronger now: I've even gone out dancing a few times. Instead of feeling like a loner in a group, I feel part of a large community of friends, and there has never been a time in my life when I've felt more accepted. Even passions I've always had have grown significantly more, and so has my confidence.

To sum it up, I am happy.

But I still have arthritis and it still hurts. My joints throb in the morning and ache when I'm tired. I still can't wear nice shoes, even ballet flats, on days I'm doing a lot of walking because my feet will swell to unbelievable proportions. I still take Enbrel twice a week (much to the entertainment of my friends). I snap, crackle and pop. I'm not close to remission. But that's okay: I'm happy with where I am now. Being in remission won't fix my problems or make me happy. I did that.

Thursday, 4 September 2014

Alone

Humans are not usually a solitary species. We form pacts and herds: Sometimes our pacts are brought together by blood, and others a common interest. Some pacts intimidate and others are together because they feel intimidated. It's perfectly normal to want to be in a group and belong. However, there is nothing wrong with being alone.

It takes a strong person to stand on their own, though they may not feel strong at the time. In fact, they may not feel confident at all and long for their own group. But there is bravery in a person who walks into a new area, filled with new people for the first time. They know the opertunity that is involved with leaving their group, but that first step is walking alone.  There are many an opportunity we would miss if we hadn't been alone.

Our groups intimidate, while one who is not afraid of the idea of eating alone is not. They may find they get chances they would never have if they were in a group. People would be too afraid to speak to them, or figure they would not want to branch out when they are constantly accompanied. Being alone invites new conversations to begin. When we are alone, we may go where others normally would not. And if you hadn't been alone,  you wouldn't have  discovered the treasures that are awaiting us.

But many don't feel this way. They feel inadequate if they cannot prove to the public that they have friends, which is human nature. It's scary to walk around alone, in a world where groups can seem closed off from you. However, I ask you to take a walk by yourself. Do something alone. You may meet a new friend or discover a place your friends may never go. And even if you don't, you showed the world your confidence in standing alone.

Alone is not a bad thing if you are not lonely. Anyway, one can feel perfectly lonely in a large group.

Wednesday, 27 August 2014

Blood Donation Blues

I have to admit, I've said "Having arthritis is so stupid" in a serious conversation. It's a very frustrating thing to have. Insulting it doesn't take arthritis away but it does make you feel a little better. I think the thing that's so frustrating is that much of what happens when you have arthritis is out of your control. You really don't get much choice in things you want to do when your body isn't well, especially with a disease that isn't always well controlled.People commonly have dreams, or rather nightmares, about losing control. But it's very hard to deal with something out of your control in real life, especially the way it so intimately is involved in your world.

A few months ago my school was advertising a blood drive, and I was very excited. I had always wanted to donate blood, and my friends and I were going to give together. But being the person I am, I did my homework before the day of the blood drive. I found out that people with autoimmune diseases which are not in remission are not able to give blood, nor are people who take biologics. It makes perfect sense, but I'm still really upset that a part of me can't be used to help someone else. I've been told the only thing that matters is I wanted to help, and that counts in a world where many don't, but it's no consolation. It also makes perfect sense people with autoimmune diseases can't donate blood marrow, but you can bet your buttons I was upset at that news too.

It always seems like arthritis keeps me from the cool things I want to do- blood donations, certain roller coasters, standing for three hour studio classes, dancing like a normal person, and being able to chew gum for longer than a minute. Of course, it almost never keeps me from doing what I don't want to do! I'm physically capable of doing home work, doing errands and chores, and sitting and watching while everyone else has fun. Sometimes I enjoy myself more when I'm with adults than when I'm with people around my own age who are so filled with energy and nothing stops them from doing what they please. Except the threat of being arrested, of course. Sometimes I can't tell if it's the lack of control of my body or if it's the jealousy that is more painful.

Wednesday, 13 August 2014

The RA Lie

I've been told a lie under any circumstance is wrong, but there are times the truth is not understood. I don't encourage lying, but I understand it. That is because I lie about my diagnosis.

Rheumatoid arthritis isn't too common, but most people have at least heard it's name in passing. But compared to psoriatic arthritis, it's practically a celebrity. RA is just more commonly diagnosed, so it's more likely to hear about. In fact, many people with psoriatic arthritis will not be diagnosed or will be misdiagnosed with RA due to rheumatologists overlooking psoriasis or because you just don't have psoriasis (my case). I was said to have JIA when I was younger, until another rheumatologist distinguished it as juvenile onset psoriatic arthritis due to my family history, nail changes, and many other distinguishing symptoms. But even then, I've been told many times I could pass as having RA.

If you tell someone you have psoriatic arthritis, they look at you funny and ask what language you're speaking (Latin, actually). Sometimes they'll hear the arthritis and say "Oh, so it's like for old people?" But if you tell someone you have rheumatoid arthritis, they mostly either get it or tell you that their grandfather has that (bonus points if they tell you that you're too young for that). So, when I need to get my point across quickly (like to a security guard who asks why I have prescription pills with me, for example) I just say I have RA. I don't like to do it, but when I'm in a hurry it is a life saver. But any other time I tend to explain that it is psoriatic arthritis- I like spreading awareness.

But even when I've explained to people that my disease is like RA, but with a few differences, I still have a difficult time. They assume it's not as severe as RA ever will be, or that it's not serious. In fact, I've been told I'm very lucky it's not rheumatoid arthritis. But this is not as true- I have been told by rheumatologists that my PsA is very similar to RA in it's pattern and course. It's just I don't have the RA positive lab work, usual swelling (usual swelling, I do have swelling though) or redness. I have had nail problems, organ problems and many other fun things though. Call that unserious.

Sometimes it's easier to lie. I didn't say it's the right thing to do though, I wish I could do the right thing and be honest, but people give me such a hard time. I wish I could say "I have psoriatic arthritis" and for once have someone know what it is. I know many people won't agree with this. To be honest, I feel very guilty. But I'm also very tired of arguing that I have a valid diagnosis. I hope you understand.