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

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.