Tuesday, 23 August 2016

Be Not Afraid

This summer was a time for my body to recover. After having had a very difficult past few years with various arthritis treatments, I decided to detox (with permission from my doctor) and try to treat it through diet and strength training. But, while I was doing that, something else was brewing. Over the summer I developed a lot of abdominal pain and pressure that came with eating, and I've quickly become underweight. We don't quite know what is going on but thankfully I have the support of so many loved ones and a wonderful team of doctors. Recently after all my blood work was found to be clean, I found out I need to have an upper endoscopy (when the esophagus and stomach are examined with a scope).

Regardless of that, I truly feel my body healing. Having cut out certain inflammatory foods, especially coffee and excessive white sugar, I feel such a drastic change. My tendons are no longer tender and the extra fluid on my joints have vanished. For the first time in a very long time none of my joints are swollen! With minimal strength exercise (I'm trying not to burn the calories I'm barely consuming at the moment), my range of motion has greatly increased. I'm not as stiff as I once was, and feel myself moving so much freer and quicker. I feel free.

So much attention is being focused on the negative part of my health right now, and rightly so, but I can't help but rejoice in my healing joints. And I'm so excited to continue forward and experiment further with my own diet, adding and subtracting to see what works. I cannot wait to begin to walk and swim more once I can begin consuming more calories. I've even decided to put my cane into retirement. God willing, permanently.

But overall, I'm feeling good. Maybe not physically well all the time, but mentally I feel very positive. I'm taking care of myself, and seeking help when I cannot do it alone. And it feels amazing to do that. I did feel very discouraged for a while dealing with my new symptoms, but I realize that there is no reason to. I'm just trying to move forward- I've been through worse before, and I can get through this too (with lots of self care, of course). Maybe I feel more empowered realizing I have so much more control in my health than I initially thought, or perhaps it's having such wonderful support. Either way, I truly believe everything will be okay again soon.

Sending lots of gentle hugs and all my newly acquired extra spoons to my spoonies today. 

Sunday, 10 July 2016

A Goodbye to Coffee

When I was thirteen years old, my mum and I had a very steady weekend routine. Right after school on Friday, we would go to my doctor’s office where a nurse would give me an injection of methotrexate. It wasn’t a huge deal, but I began to dread Fridays because of the medicine’s side effects. A lot of people with autoimmune arthritis do very well on methotrexate and go into remission. But I didn’t. I remember the doctor often telling me that the medicine “had better start working soon, because [I] won’t like the next level.” It was horrifying to hear this as a kid. I knew it wasn’t my fault, yet I blamed myself. It felt hopeless; if the medicine that worked for everyone else failed me, what would that mean for me later on?
But years later, I realized there was no reason to feel hopeless.

I’ve seen many different doctors since, and I’ve found that there’s no one way to treat chronic pain. But the most successful approach I’ve found is to treat the person, not the disease. The outcome is always better when the goal is to care for the person overall. You can certainly put your hand over the wound to stop the bleeding, but you need to uncover it and let it bleed a little as you stitch it up so it heals.

I had always been very skeptical of natural or alternative approaches to treating chronic pain. Maybe it’s because those ideas were never brought up with the doctors. But I really was holding onto the hope that there was a medicine out there that would bring me to remission- that all the pain of trial and error with medications would be worth it one day when I found ‘the one.’ And to try a different approach would make it all for naught.

It was extremely inspiring to read and follow Rheumatoid Arthritis Guy as he changed his life by deciding to keep on walking and eat cleanly, especially after his intense battle for medical care. And I began to wonder if that was something I could do too. It made sense to me that healing the body would stop the pain. But it wasn’t until this year I began to feel called to try it, after having too many issues with exposure to infection that I went without Enbrel for a few months.

For the past few weeks, I’ve been adding in recommended strength training and limiting ‘inflammatory foods,’ just to see what happens, and it seemed to help a little. But it was when I completely stopped drinking coffee that I found a lot of relief from pain and stiffness. By no means is it a cure, but it makes me hopeful that I can take my health into my own hands.

So while I’m not advocating for people to stop all medication and drop their rheumatologists (that can be very dangerous), I am advocating for people with chronic pain to hold onto hope and never give up. What I want is for everyone to know there’s always another option, even if it doesn’t seem clear at first. Don’t be afraid to try something new. And never, ever put yourself down because a treatment doesn’t work for you. 

Super inspirational sunset

Wednesday, 15 June 2016

Grant This Weary Heart Rest

     A month ago, I remember putting my hand over my heart; I could feel it racing, pounding, and skipping beats. It was worn and tired, and so was I. The weeks leading up to that moment were brutal. For six weeks, I was lucky to get four hours of sleep most nights, and all my waking hours were spent stressed and working intensely for finals. Most days, I didn’t really talk to anyone and I skipped meals to accommodate more working hours. Ultimately, I was running myself into the ground. And I didn’t care.

     But then came that moment, when I realized my heart was struggling from the stress. A long night in the emergency room made me stop working for the first time since March, and forced me to be still and reflect on my actions. I stared at the monitor that showed a heart that was trying so hard to slow down, and I thought about how cruel I’ve been to it.

     It’s been an extremely hard year. I would love to sugar coat that statement, but I owe it to my aching heart to be truthful. Since June of last year, I’ve encountered so many challenges that truly took their toll on me physically, mentally and emotionally. I’m very tempted to say it was the worst year of my life. And instead of dealing with it, I pushed myself to work to the brink of exhaustion; overachieving at school was the only outlet this restless soul had.

     During the year, I frequently whispered a desperate prayer: “Lord, grant this weary heart rest.” Yet, I refused rest when it came my way. Because I knew that to rest meant to heal, and I didn’t feel ready yet. It was so much easier to ignore dealing with the scars that made my heart ache and race with fright. But I realized there was no escape when my heart quite literally told me how tired and weary I was, and that it was time to have rest. It was time to start feeling better.

     Today, I put my hand over my heart; what I felt was a gentle and steady rhythm. Four weeks is a very long time ago: Since then, I’ve been at home and been so lovingly cared for by my parents. For the first time in months, I can rest privately, and I’ve benefited from the restorative powers of sleep. I’ve gotten to enjoy the warm weather and let the sun kiss my face. Every so often, my best friend comes and takes me out to my favorite places. I don’t venture out too often at the moment though, because I’ve found such comfort in the refuge of the peaceful quiet of my home. Just last night, I picked up some colored pencils to draw for fun for the first time in a year.

     I’m happy. And for the first time in a while, I feel hopeful. There’s so much I’m looking forward to this summer. I’m glad that I’ve finally gotten time to recover, and fill up my cup again. I want to start writing and drawing again soon, because I’ve missed those things so much. And I’ve found myself moving away from the things that once hurt me, and becoming closer to the ones who helped me through it. My heart still sometimes beats quickly, but it does so with the strength training I’ve taken up so I can feel stronger than everything that’s happened.

I’m healing. I’m happy. And I am hopeful.

Friday, 11 March 2016

What Really Grinds my Gears

You know what bothers me? Like, really grinds my gears? When I'm walking in a huge crowd of friends and nobody thinks to slow down to my speed. Do they really think I'm being anti-social and just want to watch everyone in front of me enjoying themselves? HECK NO! I want to be the leader of the pack, enjoying myself with the rest of those beautiful people who are not cherishing their youth nearly as much as they should be. But no- I'm walking in the back, all by myself watching. And I'm usually a good distance behind where you probably don't know I'm with those rowdy hooligans- when in reality, I'm one of them!

Even when I've got my dumb cane with me, I usually get left behind in the back. I mean, it's bad enough to leave the girl who walks like grandma trailing a couple yards away but it looks really bad when grandma's got a cane, too. Not to mention a little dangerous, don't purse snatchers prefer hobbling grandmas to groups of university students?

Getting left in the back hurts so much because not only do I have to watch my friends having fun without me, but the only things I'm thinking about are how I would love to collapse right where I am and how nobody would notice if I did. I'm not  going to lie: being 19 and having chronic pain makes me feel like a freak and unlovable. And being kept at arms distance away reaffirms this feeling.

I know it's not purposefully done. To be honest, I bet they never really thought about it before or noticed. Or maybe they noticed, and just didn't think it bothered me because it's 'my normal.' And I know that I probably don't appear to be in a good mood when I begin to trail off, so if one does notice, they probably think I just need to be alone. I really don't expect my friends to understand, and I don't want them to be able to understand either. I just wish I didn't have to be alone.

Sometimes I wish someone would slow down. That's all I want. Even when I don't feel good, I just want to be included. I already feel really isolated in lots of small, stupid, and seemingly insignificant ways, but being left alone on walks home is the one that bothers me the most. I don't know. It sounds kind of dumb when I write it, but I know I can't possibly be the only person in the world that wishes their friends would take a slower pace so no one would ever have to walk alone in life.

Monday, 18 January 2016

I'm Nothing but His Toy

I've been doing a lot of writing on this blog about why the past few months were so difficult for me. But this is, by far, the most significant thing that happened to me. While I'd like to say this is something that is 'over and done with,', I can't: This is still something I'm dealing with. I'm actually nervous to share this post so publicly because I'm scared of the responses I'll receive. Please try  to understand.

Fall semester was supposed to be amazing. I was going to hang out in all my favorite places with all my favorite people. But instead, it ended with me afraid to leave my room and almost completely isolated. My perfect semester was interrupted by him.

I don't know if he likes me or is obsessed with me, but regardless, I find he likes to be in my company. Often, without my knowledge. He's walked behind me and followed me home. Sometimes, he sees me approaching my apartment building, sprints to the entrance and waits for me to enter. Once, from the window of my apartment, I saw him waiting outside the building, waiting for me at 8 pm: the time I usually came home that day. Thank God I was already safely inside. He learns my habits very quickly, and suddenly appears in places I never use to see him, watching me like a hawk. He stares at me, keeping an eye on me even in crowded situations. He copies my movements. He hangs around my friends so instead of being with them, I sit alone. He embarrasses me in front of friends, suggesting that I'm in love with him and should go on a date him. One time, he mentioned the color hair clip I wore each day of the week, despite the fact I only saw him twice during that week. He walks around the halls of my university. He has successfully isolated me from many people I once hung out with.

On one of the last days of the semester, I broke down while studying at the library. I found an empty women's bathroom on a deserted floor and locked myself in, sobbing in fear that any minute he would come and find me in the library. I had left my apartment early that morning, praying he wouldn't be up yet. I didn't even eat at all because I was afraid to go to the school cafeteria, where he had watched me eat breakfast just days earlier. This man drove me to be hysterically crying in a public bathroom. 

I've asked for help from people I thought I could count on. I didn't ask for miracles, but just to watch out for me, but got mixed responses. Mostly 'Elizabeth, you're over reacting.' Sometimes, people even laughed and said it was cute that 'he has a crush on [me].' Some people told me to stop coming around all together, because he can't bother me if I stay home. I got a lot of suggestions that it is my fault- despite the fact I've never been friendly to this man, let alone seduce him. The only solution I saw last year was to isolate myself, and even that stopped working when he began to hang out around my school more often. Even the police, who were called by my mother that day I broke, told me there's not much help they can give because he hasn't threatened me.

I don't want him to get in trouble. I just want him to stop.

I'm anxious. I'm scared. I'm embarrassed. I feel totally abandoned. I'm ashamed. I feel guilty, like it's my fault. I cannot visit my old favorite places without feeling sad and alone; I'm lost. I've lost hope. My confidence is completely shattered.

I'm nothing

I'm nothing but a toy for some man to play with. People I thought I could trust told me this. And I have no right to be upset by this, because obviously, it is my fault. It's always my fault.

Wednesday, 13 January 2016

When Classes Begin

I haven't really known what to post about. Life is a little dull at the moment. I've been home from school for a few weeks, and go back next week when classes begin. I've done very little over the break besides rest, and even then I just don't feel rested. Somehow, everything recently is an effort.
I don't feel particularly bad, yet I don't feel good either. I'd be quite satisfied to have another week to lie around and do nothing, but I realize I'm truly pushing my limits on 'rest.'

In October I developed a nasty cough that would last well into November. The end of November and most of December was very stressful, and I had a significant increase in pain and fatigue. No doubt, my body is begging for a rest. Yet, I don't seem to be giving it the rest it craves. Recently, I've experienced a lot of vertigo, headaches and other odd symptoms that make it clear that I am not 100% yet. The doctor explained those symptoms are from inner ear inflammation, probably from a viral illness. Though I don't recall having a recent onset of a viral illness, I'm willing to bet whatever caused my cough lingered for a long time.

Honestly, I just wish I had energy. I feel sick and tired, but at this point I've felt sick and tired for so long it seems normal and I just have to push on feeling this way. I'm even beginning to nap during the day- something I've never done unless I was very ill. I use to love long walks and trips to the store with my mum, but now I just want to sit in the car and wait for mum to do the shopping. Sometimes I envy babies who enjoy shopping trips from their strollers- I want to enjoy the change of scenery from the comfort of my seat.

Last semester, I isolated myself when walking became increasingly exhausting and painful. And I have my fears about going back to classes. This semester, most of my fears stem from not having the energy to get my work done. I also fear that the vertigo will not go away by the time I need it to- my major requires me to build product prototypes, and I'm afraid I will experience sudden vertigo while using construction tools such as a band saw. I nearly fell over last night brushing my teeth, and I'm picturing the same scenario but with a drill in my hand. But also, I fear feeling isolated again.

Classes are supposed to be a joy- it's there that I learn what I love and get to be with my friends. But lately, I just wonder how exhausted I will be at the end of it. Especially considering I'm still exhausted from last semester.

Monday, 21 December 2015

I'm Sorry; I'm Sick.

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 August. What I didn't expect was that I'd feel so sick.

Per usual, I had the 'normal' side effects: I wasn't really eating all that much, I was tired all the time, and my skin became very dry. But I didn't expect to experience severe depression and anxiety. I was constantly panicking over small things, and whenever something didn't end up exactly as it should've, I was reduced to tears. Sometimes I'd act out on it by snapping at people, especially the people I love the most. And when I wasn't worrying, angry, crying and feeling my heart racing, I was so empty. The depression is harder to explain. Somehow, it just made everything slow, tiring and worthless. Life didn't have a purpose other than being a cruel torture, anymore.

I knew I was a killjoy at the time, so I stopped talking with my friends and I rarely left the house. When I did leave the house, it was to go to my part time job. Though I kept myself composed there, I would come home and break down crying from the treatment I received from my supervisor. I began to get so anxious about my classes, I fantasized about dropping out and working online and from home so I wouldn't have to see anyone other than my parents.

Two or three weeks before I was due to go back to my classes, I consulted my rheumatologist. She opted to put me on a lower dose of Plaquenil. It seemed to work, and I began to calm down. Life wasn't as miserable as it was on the full dose, and I began to let the smaller things slide. But things were not perfect. It took me a long time to realize that lowering the dose would not take away the side effects; it would just reduce them.

When the dose was lowered and classes were in session, I hoped I would be able to handle myself- not let myself be a killjoy or appear neurotic in any way. It worked for the first few weeks, before one particular situation pushed me over the edge. After confiding with a few friends about how this situation made me feel, and receiving feedback from some that I was wrong to feel the way I felt, I began to close myself off from everyone again.

By late October, my rheumatologist decided enough was enough and she discontinued Plaquenil. Thankfully, she prescribed Enbrel- a medicineI did well on in the past. But just discontinuing the medicine didn't make the side effects go away over night. I dealt with them for a couple more weeks anyway. My mental health is only recently where it was originally- needing occasional reassurance everything will be okay, but still able to look at the bright side of life, knowing and feeling how loved I truly am.

During my struggle, I occasionally confided in very close friends about what I was facing. However, it was hard for me to admit something was terribly wrong. I was so afraid of being a burden, asking for extra support, patience and prayers. I wanted to pretend I was stronger than these side effects and emotions. And I am- I got through it, didn't I? But I needed help and wasn't letting myself receive it because I wasn't being honest and I felt guilty. I regret now not reaching out.