The Girl With Arthritis

     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 statem...

"If you actually have arthritis, doesn't it hurt to walk?" That was how the conversation went. I didn't know it at the time, but I had opened up a Pandora's box. Someone ( I'm not disclosing this persons name or relation to me) had just asked me about having arthritis: They heard me mentioning it to someone else. I'm usually honest about my diagnosis, so I told them I live with arthritis caused by the immune system. They asked how I deal with it, so I told them I take immunosuppressants and try to stay active. This person is very pushy and nosy, and I suspect a bit overdramatic. They continued to question me, as if making me prove something. They said, "so the pain isn't all the time?" And I said, "No, it's constant." I was asked, "but if you actually have arthritis, doesn't it hurt to walk?" And I said, "Yes." "Then why...?" "Because either I walk or I live in a wheelchair."...

I try to stay very active in the community of fellow autoimmune disease owners. I'm actually part of a group on Facebook (My Immune System Hates Me) for young people who own autoimmune diseases. I really love being a part of it: Even though I'm not very active on it, I've really gotten to know everyone and I really care about them. My heart breaks for them, too. As just the other day, my heart was torn in two for one. Though I won't say who for privacy reasons, this person talked about graduating university just the previous year with hopes of going on to a bright future. However, she is now struggling a lot with her health and it's so hard for her to get by day to day. It's amazing how fast your life can flip. Scratch that, it's scary how fast your life can flip. Especially when you're only so young. Life doesn't get to be put on pause until you can feel better- time keeps ticking and dreams collect dust. I think it's funny how our brains are...

Whenever I'm introduced to a new doctor or present doctors with new, odd symptoms, my mum likes to tell them "she's going to give you a run for your money." That's completely accurate. Most times, doctors can't figure out what's wrong with me- at least, not for the first two visits. I think the only time I ever got a diagnosis in one doctors appointment was for a classic case of bronchitis (that I walked around with for a month or so because I just didn't want to see another doctor). And I know I'm not alone in that either. Lots of people I know walk around for years not knowing what's wrong with them. I went about a decade. I know a lot of GPs are not able or don't know how to properly treat many autoimmune and other chronic illnesses, but I can't understand why patients aren't refered to specialists faster. It's cruel to make someone suffer and ignore it. I also hate when specialists dismiss patients quickly. Maybe it's ...

I find it funny how adults preach to children that they should treat those with disabilities no differently from others, however adults tend to do the opposite. When I tell my peers about being chronically ill, I don't usually get treated differently after. It does happen, and sometimes it's with extra consideration. It's really nice. Adults, on the other hand, usually treat me differently from others. Occasionally it's just to make sure I'm doing okay, which is always appreciated. Other times it's as if they don't believe me. But more often than not, it's just different from other kids. Adults are often surprised I lead a more normal life than they expect. I would like to set the record straight: People with chronic illnesses are normal people.  I'm not a hypochondriac. I'm not a saint. I'm not looking for attention. I'm a teenager with a chronic illness. I'm a girl who loves her friends. I think homework is the bane of exis...

I was about eleven when I began being treated for juvenile arthritis. As clever as I was at eleven, I didn't understand everything. Sometimes I wish doctors would sit there and tell you more, or at least give you a little pamphlet called "All the Things I Don't Explain." Even if I was beginning treatment and diagnosis now, I wouldn't have known these things. And I admit I'm still learning. 1. We're Not Treating Symptoms. We're Treating a Disease. Treating the symptoms doesn't treat the disease, but treating the disease does treat symptoms. It may not mean your symptoms are relieved for a long time, but it could mean that damage is prevented. For example, if your doctor says it could take six months for a medicine to take full effect it means that you're body will be completely using the drug against the disease. It doesn't mean your symptoms will completely disappear by that point. I really wish they explained that. 2. This disease is...

Last year, I did an eight week course. It was an art class almost every Saturday morning, from mid October to December. I really did enjoy the class: It was a lot of fun! I made friends within the class and got a lot of good artistic advice, and even more confidence in my work. I don't regret doing the class what so ever. My body, on the other hand, hated it very much. I tend to be busy over the week (and by 'busy,' I mean going to school, coming home and doing homework in bed). But those weeks were extremely busy for me: Things started popping up from nowhere! It was a bit more than I could handle. There was actually a point when I became so stressed out that accidentally spilling coffee on some paperwork I was supposed to be sending out sent me into a hysterical screaming fit. Mentally, I was breaking down. But the physical toll was much more intense. I lost my Saturdays to recover from school since I was out of the house by six thirty in the morning (just like every...

 "Do you fight this disease or do you live with it?" I was recently presented with this question. And to be quite honest, I gave no answer. I had to think about it for a while before I could answer it.  Chronic illnesses are very complicated by nature. When you're diagnosed with an illness that is serious and are told that there are only treatments to try to control it, it's devastating. That diagnosis can make your life flip, even if the symptoms already seemed to turn the world upside down. It can be confusing and there are even times you might not know what's really going on. But if there is anything I remember clearly from the time of my diagnosis, it was discussing treatment options that can making living with arthritis easier. There was little talk of fighting, so to speak. I think a lot of the time we use the terms "living with," "deal with" or "try to control" to describe what treatment for chronic illnesses are ...

 Autoimmune diseases. They're pretty self explanatory: the immune system attacks the body and causes problems. It's pretty obvious that the best way to help ourselves is to try and care for the immune system. A lot of time this can mean taking immunosuppressant medicines. But even when one isn't taking those, it's still important to prevent getting sick since that can make you flare. Lots of people will suggest things you can do to not become sick. My rheumatologist's absolute favourite is getting the flu jab (no, I've still yet to get it). Others will recommend bathing in hand sanitiser, avoiding contact with people completely and living in your house until spring. However, I have one tip that will absolutely guarantee that you won't get sick: Don't order lemon. When you're out to eat and you ask for a glass of water,  make sure to ask for no lemon. Lemon wedges are notorious for being one of the bacteria filled things you can find in a rest...

Oh, to be young and rested... Wait, that's a total contradiction. From what I'm told, young people usually live perfectly fine off borrowed energy, caffine and crashing at two in the morning until they're tweety five-ish. That seems about right to be honest. Except in the cases of if you have some sort of autoimmune pain disease: You still live off borrowed energy, caffine and falling asleep at two in the morning (and probably some medicines) but you tend to flare, be miserable and lots of other 'fun' things. Oh, to be young and chronically ill. I'm a jealous person. I'm jealous that a week of school and Christmas shopping takes a lot out of me. I'm jealous there are days I'm doing work in bed or on my couch because I can't muster the strength to sit up correctly. I'm jealous that although I can and will push myself to go and do things, I often end up very painful and tired after (but never regretful). For goodness sakes, I'm jealous I ...

With all the wonders of science and technology, researchers have found a new therapy that is able to help with chronic pain, depression, and all sorts of diseases: Touch therapy. Different from massage therapy, touch therapy is simply a person touching certain points on the body to relax a person. Touch is also known to release chemicals in the brain that reduce pain and give joy. It's amazing what our bodies can do from touch, so why has it never been pleasant for me? I've had arthritis since I was extremely young. There was evidence since I began walking when I was one year old. My uncles were very... Playful. They loved to toss around their nieces and nephews but I never had much of that. I recall it being very painful, and to think that was only the beginning! I didn't like games in school very much either as they tended to involve touch that was often a slap as they ran by (I was always rubbish at running anyway). I was about eleven when my 'friends' thought ...

A lot of people have the notion that some kinds of arthritis are 'better' than others. Some people argue it's worst to have an autoimmune arthritis than an osteoarthritis, and it goes farther to which kind of autoimmune arthritis is the worst. I think what we don't understand is that it isn't which kind of arthritis is the worst, it's how each individual's disease progresses that judges how severe it is. Let's take a conversation from about a year ago. It was between my mum and the parents of a friend of mine. My friend's parents had run into my mum and they began to chat. My Friend's parents knew about my arthritis and asked about it. At that point I was not doing well in any sense: Not only were my joints a mess, my kidneys weren't so hot From the medication. Anyway, before my mum brought up that my Friend's dad asked what kind of arthritis it was. My mum told them juvenile psoriatic arthritis, to which he replied "Thank God it...

A few weeks ago I was talking with a student nurse. Our conversation somewhat ended coldly, but not the way you would expect. You see, this person happened to say, "I mean, it's just arthritis." I kind of smirked, gave a small laugh and said "You're lucky you said that to me and not a patient: I know what you meant, but a patient would think you just completely dismissed their pain." As I gave her the heads up, she proceeded to obviously lose attention and began to text and laugh at a message, not acknowledging I had spoken at all. I get it. Nursing is an extremely difficult career. Believe when I say I understand- not completely, of course, since I'm not a nurse- but I see a lot of things they put up with and lots of great things they do enough to see the passion behind it. I'm in hospitals enough to be reminded of this constantly. And I understand that there will be one patient with a slight fever who insists they are extremely ill and in agon...

This is part two of two connecting posts for a reader. The first section was all about diet changes to manage inflammation ( Diet to Manage Juvenile Arthritis ). This part is about exercise. When you have arthritis, it's easy to fall into the trap of not exercising. It's not purposeful, it just hurts to move around sometimes. Though pushing your limits is not recommended at all, it's important to try and keep active. Keeping active will help you keep your joints from becoming too stiff and keeping them strong. You may be sent to physiotherapy (physical therapy) to assist, and this is the person who should help you the most in your work out planning. Your doctor would be another good person to consult with. And most importantly, listen to your body. Stretching is good. Some people have found good results in yoga. Yoga can be very good for a person with arthritis but it can be hard to tell what our bodies can handle. As a person who couldn't handle yoga, I recommend t...

Very recently, I received an email from a reader. She told me how she's trying to find information on how to manage juvenile arthritis through diet and exercise, but hasn't found a lot. She asked me to write about helping treat arthritis with exercise and diet, and I did so right away. Today will be able diet, and my next post will talk about exercise. This was written with E in mind, but with the hopes others would benefit. Diet There are several ways to help arthritis. Unfortunately, there is no 'one size fits all' diet because different things affect us differently. Some people are affected by things like dairy, red meats, white flour and various other things. The best thing for us  all (chronically ill or otherwise healthy) is to stay away from processed, fatty and greasy foods as much as you can: Eat as freshly as you possibly can, whenever you can. That doesn't mean (necessarily) to buy organically, it means that it's best to eat your vegetables with...

When I was going through early treatment for arthritis, I was very depressed. Part of it was due to medication. Very few people realise it, but medicine can affect our mental health more than we think. It makes sense when you think about antidepressants affecting one's mood. What we put into our bodies has a great affect on what comes out, whether it's a good result or a bad attitude. Many medications warn they can cause mood changes or depression. Medicine for autoimmune disease is no different: several of these can cause mood changes. I can't talk from personal experience about many of the medicines, however I can talk about two: Methotrexate and Enbrel. If you're a frequent reader, you may already know that methotrexate did not work well for me whilst Enbrel has. I've taken Methotrexate for two years; one year at a time with a year between. I took it both through subcutaneous injection and orally. Both times I experienced mood changes. The first year I mostly...

In this post, I talk about a very hard time after I was diagnosed with arthritis. I share this because I think it's important for others to know that this is a hard disease. For the longest time I felt weak and that I was the only one weak enough to feel this way. But I know now that that is far from the truth: Many people feel this way and it's because they are strong. I know I'm not the first when I say 'I don't want to be alone in this disease.' I don't think anyone has ever said, 'I want to fight this alone,' and actually meant it. It's an ongoing thing that never seems to end, with surprises at every corner. I couldn't go on if it weren't for the wonderful people behind me. I know that for a fact because there was a point when I had almost no one. I did it almost alone for a long time. I had my mum, and she had me. Even then, sometimes there was a wall of fatigue between us. I was newly diagnosed and was taking methotrexate. It ...