Monday, 18 May 2015

The Ride for Lyme

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 suffering, two men decided to spread Lyme awareness and inspire change. They created the Ride for Lyme, where the two are currently riding their bikes across Canada. They have been stopping in different cities, educating leaders and spreading awareness as much as possible.

The two guys doing the ride are Daniel Corso and Tanner Cookson. I think they're doing an awesome thing! Especially because I can barely ride my bike for fifteen minutes without stopping for a break! Though I do not know Tanner, I met Daniel this past year at our university's Catholic center. I can reassure you he's an awesome guy with a heart of gold, and he has a lot of support from people at school and beyond.

When I learned of what Dan was up to with the Ride, I knew instantly that it was something I would be sharing on Arthritis Girl. As a person with a chronic disease that is often unrecognized, misdiagnosed and is not treated correctly (or at all), I understand the struggle that those with Lyme go through to just feel their symptoms are even valid (forget getting a diagnosis and treatment). Those with Chronic Illnesses and their communities need to stick together and help one another, which is why I so appreciate and admire Dan and Tanner's mission. And why I decided I should share a bit about them and do my part to help.

I didn't write too much about their mission on this blog, but I'm including the link to their website on the bottom of this post. From there, you can find their Facebook, Twitter, and Instagram accounts and so on. On my Facebook page, you'll also be able to find links to their page. So, please just take the time to read and donate if you are able to.

Ride for Lyme

http://www.rideforlyme.ca/


Thanks Dan and Tanner!

-Elizabeth
The Girl With Arthritis

Saturday, 16 May 2015

Desperation

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 nice and listened to me. She was extremely concerned that not only did I get dismissed by the last rheumatologist, but that I had problems that were completely ignored previously. My new rheumatologist reassured me that I do have disease activity- which speaks a lot since it was a very good day; even on horrible days, past doctors have said I show no disease activity at all. She sent me for a blood test that required 1/4 of my blood (at least), and enough x-rays to guarantee I will glow in the dark one day. She also put all my patient information on my online patient portal, and all my test results were posted as they came in.

It turns out that I'm worse off than the doctors ever realized. The rheumatologist called a little less than a week after my appointment. My bones have developed osteopenia (they are not as dense as they should be). My feet are a bit damaged. I've also been borderline positive for lupus for a year and a half, and was never told. It was probably thought to be drug induced lupus caused by the Enbrel, however my ANA rose six months after stopping Enbrel. But as my new rheumatologist put it, "You haven't developed lupus yet."

She gave me options. She told me I could certainly go on Enbrel again, but she would prefer that I try something else first. So, I'm going to start sulfasalazine very soon. I see her again in two months to see if sulfasalazine worked. If it doesn't, I'll probably go back onto Enbrel. I'm glad she gave me options and made it clear that it was up to me what I want to do with my body.

I think it's the start of a wonderful physician-patient relationship.

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: 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

Retreat!

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."