The Girl With Arthritis

 Do you ever feel like you live in a world not built for you? I do. Recently, I've felt this way about a hefty door on my commute. It takes a lot of force to open and immediately swings shut; I find it painful and tiring to handle. Others have complained and had a handyman look at it, but it's remained in this state for months... Click here to read the full article at Psoriatic-Arthritis.com.

(Resharing this from 2021)  When I first started this column, I had so many things I wanted to share with families coping with juvenile arthritis (JA). I’ve written about everything from making home injections less painful to ergonomic backpacks. As this will be my last column, I wanted to share the most important thing I’ve learned over the years. The most valuable piece of advice I can pass on has nothing to do with treatments, doctors, accommodations, or arthritis hacks. It’s that you need to hold on to hope and remember that a life with JA can still be a happy one. Even if the future looks a little different than you expected. Read the full article at juvenilearthritisnews.com

I was lucky enough to have about a year-and-a-half-long remission from psoriatic arthritis (PsA) - and it was just as you would think - absolutely fabulous. It fell right around my senior year of high school and first semester of college, letting me spend those times like any other teenager. But it would be a lie to say PsA wasn’t still a concern during this blissful period. Click here to read the full article at Psoriatic-Arthritis.com.

Being diagnosed with psoriatic arthritis at any age is rough, but it can be especially challenging in childhood and young adulthood. No one sees the struggle and pain: they see a young face and assume you have the energy and strength of any young person. While I do sometimes appreciate being able to hide my illness, there are lots of times I wish others could see I was struggling. Click here to read the full article at Psoriatic-Arthritis.com.

After slowly rolling out of bed, I hobble to the bathroom. I don’t want to move a muscle — they’re all aching and don’t want to cooperate. Sitting on the toilet is a joke, and so is trying to get back up. No, I’m not in the midst of a juvenile arthritis flare. Nor am I recovering from an injury or fall. Nope. I’m recovering from a new regimen of exercises I started to strengthen my hips. And I am feeling it. Read more about dealing with pain from physical therapy...

     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...

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...

"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...

I've always been really good with numbers, even when I was little. I was about twelve years old when I became very interested in statistics: 1 in every 1,000 child will have some form of arthritis, 2/3 will have 4 or less joints affected, and at least 30% will go on to have arthritis as adults. That's a lot for a child to take in. Sometimes you seemed like one of a large group and other times you were rare. When I was fourteen and got diagnosed with juvenile psoriatic arthritis, my numbers changed a bit: I felt part of an even smaller group. Only 2-10% of cases tend to be juvenile psoriatic arthritis, but it could be more since it sometimes looks like other types. And even though I found out 80% tend to have nail problems too, I also found 85% have psoriasis first. I'm one in a small group of people who don't have psoriasis before the arthritis sets in. They say that one develops skin problems within months or years of the onset of arthritis. But I have had evidence o...

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...

"If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what would ask for or want people to know?" The one thing I would ask is for people to learn how to properly hug a chronically ill body. I've had hundreds of hugs in my life, and I can count on one hand how many were 'just right. ' There are times I really just need a hug. Unfortunately it can often be very painful: People squeeze too tight or are very distant and cold. People tend to not want to touch me because they know it hurts sometimes, and it's horrible to know people are afraid. The ideal hug would be that given by gentle arms. Even though squeezes are painful, you can certainly wrap your arms around me. Don't be afraid of me; I promise I won't break or pass on my chronic illness. I might feel awkward and stiff, but I'm not trying to be cold: It's just how my body works. And please excuse my freezing hands! After all, don't they say cold h...

Waking up isn't so hard, it's the getting up part. In the morning my back is killing me and more recently it's extended to my ribs. They're just so achy in the morning, like I got punched there or something. It's odd and I don't like that. But it is a quite common symptom in autoimmune arthritis- of course bring it up with your rheumatologist if you are experiencing this. I think wake up pain and late night pain is the worst kind of pain because your focus tends to only be then pain, rather than other things. It hits you at a time when your most vulnerable, mentally and physically. I once read that although we may experience pain in a different body part, pain always comes from our brain. It is best to keep our minds busy when we're in pain. It also explains brain fog.  I try not to dwell on pain, but it's not always possible. So today I decorated my Chrismtas tree. It's a small, white little thing and it's all dressed up in red- it's warm ...

When I first began treatment for juvenile arthritis, I was put on a roller coaster: Mentally, emotionally and physically. I would say the first two years were the most wild, but there have been plenty of loops, hills and spirals along the way. Chronic illnesses tend to put people on roller coaster journeys. Nothing is set in stone, which means whilst things could go wrong, things could also go well. We're all at different parts of the ride, of which is completely different for everyone. But I think there are about four types of coasters we've all been on at some time. The Wooden Coaster: The wooden coaster is generally predictably since you can see the front of the track. The thing about it is that it's not a smooth ride: Wooden tracks are rickety and although you know where you're going, it can feel like it can change at any moment. This track can instantly turn into one of the following. The Steel Coaster: Typically very fast and unpredictable. Sure, you're ...