The Girl With Arthritis

(This article was originally published April 14, 2020. I am reposting it to bring attention to an important topic.) I've certainly had plenty of low points while living with psoriatic arthritis. Of course, that includes severe flares that made walking, talking, and even lying down excruciating. And yes, the pain has played a big part throughout these times. But I would be kidding myself if I didn't call out other symptoms, like fatigue, that made these periods downright miserable. Why doesn't pain feel as bad as other symptoms? I don't want to downplay the extent of the pain. It can keep me up late at night or wake me in the small hours of the morning. Pain can make it impossible to feel comfortable in any position and drive me to the point of mental and emotional breakdowns. Read the full article at psoriatic-arthritis.com

Photo credit: Psoriatic-arthritis.com Here's a controversial opinion: good shoes for people with psoriatic arthritis (PsA) do not always have to be expensive. There, I said it. There's a lot to unpack in that statement. I am not implying that any old shoe from the clearance rack will work for you. Nor am I saying that you shouldn't consider investing in well-made orthopedic shoes; footwear is an excellent investment, and some brands are known lifesavers.  Read the full post at psoriatic-arthritis.com

  Photo credit: Psoriatic-arthritis.com I much prefer the summer to the winter. New England winters are bitter, to put it lightly, and rough for anyone dealing with arthritis. Being cold makes me hold myself stiffly which means I'm less likely to stretch. This makes my joints lock up and it's very painful. The barometric changes due to snowstorms and freezing rain can also significantly impact my pain. But even though summer has fewer triggers, I still have a few surprising ones...  Read the full post 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...

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 ...

Heel pain is very common with psoriatic arthritis. I'm not am exception to that. Some mornings I wake up feeling as if I slammed my heels into the pavement for six hours straight. In fact, sometimes I imagine that cutting off my heel would feel better that living with it. Walking isn't always pleasent either: It can feel like walking on spikes. Recently my rheumatologist gave me a miracle: Heel Cups. They're just like they sound: Little foam wedges that cup and cushion your heels. They're like shock absorbers for your feet. And gosh, it's like a piece of heaven in your shoes. I've worn them in two pairs of shoes and so far they've fit both well. That's surprising considering I already have enough 'equipment' in my shoes as it. Anyhow, heel pain or not I highly recommend looking into getting a pair. They do absorb the impact of walking (or rather, limping) and make it easier on your feet and other joints. Look for foam ones that are thick: ...

Driving is probably the most common form of transportation. Most people learn when they're a teenager, and learning is a rite of passage for many young people. And though it's considered to be a very easy, common thing to do, a few don't agree one hundred per cent. Think about the physical act of driving. Your legs are stretched out in front of you and you have to keep control of the pressure you have on them to control the pedals. Your arms are stretched out in front of you to steer. And let's not forget turning your head to look around. And if you're backing up, let's not forget the painful twisting and turning there! It can be really intense and take a lot out of you! Driving for some is really painful. Some will say you're very lazy if you don't want to drive, or if you never were able to learn. I beg to differ. It's very hard to force yourself to do something that causes pain. It can also make you feel very unsafe: we know pain can be extrem...

I hope everyone had a wonderful Christmas! I certainly did. I've had the pleasure of being surrounded by family for the past few days. Although sarcastic by nature, I don't mean it sarcastically: it was actually nice to see my family again. Mostly.    There was one event in particular that stands bright in my memory. It was towards the end of the night and only a few were left. My younger cousins were playing nicely when the inevitable happened- a crash and some crying. An object that wouldn't be heavy to an adult but very heavy to a very petite eight year old fell on said child's foot. Even though we're still questioning if it really "just fell" or "if he threw it at me," one thing I can't question is that the child was really hurting. What I thought was interesting was the reactions of three people. The first person had a wonderful time with the child, however it was quite miserable for the child. He really enjoyed jokingly telling ...

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...

Sleep: My favourite activity. I can't seem to get enough of it! But the couple hours of inactivity isn't great for those of us with arthritis and other pain disease: Morning stiffness is an extremely common symptom. But pain can also be a huge problem in the morning, as I have been personally experiencing: Lately I've needed a half hour just to get out of bed in the morning. Waking up and getting up are two completely different things. Waking up, you may experience anything, from pleasure of waking up to the sun shining, little pain and a day of relaxation  to a blaring alarm, lots of pain and a busy day ahead. Sometimes I wish the day starts when I say it can, having slept in enough to feel completely rested. But, that's not possible... Anyway, getting up is a process in and of itself. It's hard to try and move when you feel like you can't, and it's worse when you're in pain. Sometimes it seems like it would help the pain to just stay in pain, and I r...

Dear Elizabeth, What are you doing?! You should be burning out any day now, and I'll make sure of that! Really? Volunteer work? I get it, it's good for others... But not so for me. Let's pay a little more attention to who controls if you have the stamina to, alright? School... I get it, you've got your priorities but I've got mine too. You can't neglect me so you can go to school . And now your doing Saturday classes... Really? You think you can handle that? Well, I'll make sure you've got your hands full between classes and me. Oh, and lets not forget those stupid art projects your always working on. I know your working on lots of things, especially for The Girl with Arthritis, but what about me?! Don't you ever sit down like I want you to? Elizabeth... I miss you. You're just so busy all the time... There just hasn't been enough time for me lately. You just don't pay attention to me anymore. I miss all the time we spent toge...

Recently one YouTube, a very well known Youtuber did a video talking about what he is most afraid of. He said that since he is an atheist, death is the scariest thing for him. Imagining nothingness for eternity scares him a lot. Many people agreed, saying that death is their fear because of it. How I see it, they probably don't actually fear death itself, they fear nothingness. Every fear we have tends to be for a bigger reason, and some of them come for bigger reasons. For example, I don't like the dark. It's not that I fear the darkness itself, it's that I fear there is danger I can't see. But that's not my 'biggest fear.' I suppose you could say fear is pain. It sounds funny from a person who's had arthritis since before they could remember but it's true. I am actually afraid of actual pain, but there is more to it. I'm afraid of what's happening to cause the pain. I'm afraid something is wrong. I'm horribly afraid of suffe...

I've only really considered myself to have one flare in my life. I was eight years old and hospitalised for severe hip pain, high fever and dehydration. You literally couldn't touch me I was in so much pain. I know how bad my arthritis can get- that bad- and thankfully it's never happened again. I've always thought that it was only when my pain got to that point that I'd be in a flare up. Otherwise, its been bad days, bad weeks, horrible nights and fighting tears back when in public. But reading stories and following fellow arthritis warriors who have flares occasionally or often  got me thinking 'what defines a flare up anyway?' A flare up is simply defined as an increase in symptoms from a patients usual symptoms. It may sound straight forward, but I don't feel like it is. Things with arthritis tend to be vague. The definition of flare is very vague. "How much pain do I have to have to be in a flare?" "Do I have to have extreme swellin...

Autumn is here! It's that lovely time of year full of beautiful foliage, warm drinks and for some cosy fashions. It's also when it begins to get quite chilly, which can be a real problem for a person with joint problems. Those with autoimmune arthritis definitely can feel the effects of the changing weather more than others. Whether it's stiffness from the cold or trouble keeping warm, I know I can relate. So, I've put together a bit of help for the fall. 1. It may be very cold at night, and our human reaction is to curl up our body whilst we sleep to keep warm. This position may cause a lot of pain in the morning (I would know from experience). Try to layer your bed so you won't be tempted to sleep curled up: it's better to sleep as of standing up, or legs bent loosely. You'll stay warm and mornings may not be as stiff and painful. 2. Drink plenty of warm fluids! It will help your body keep warm, will soothe you and the hot cup might help sore hands. Tr...

I'm going back to school really soon. In a way, I can't wait. I really love learning and I can't wait to see my friends. I'm looking forward to making more friends and my classes. But what I'm not looking forward to is Arthur's reaction. You see, Arthur hates school a lot. After a break with good weather, comfortable chairs and being able to get up and stretch as needed, I already know the first few weeks are going to be torture. Every year Arthur makes adjusting back to school difficult for lots of teenagers, young adults and children. On top of having new responsibilities, getting used to new routines and meeting new people, we also deal with more pain than usual. It tends to get colder when school is back in session, and that can easily bring more pain. Sitting for long periods of time doesn't help, especially when few  practice proper posture in school. Writing more often may also be painful. And of course, everyone is different: Walking around a large...

Arthritis joint pain is one thing. I've lived with it long enough to know how to cope with it. I have found also easier to 'read' that pain: I can easier find what's increasing the pain and how I can help it. However, there is one joint that I find impossible to 'read,' and I have the worst time trying to find what's going to help it the most. My jaw. Most people will develop a click or pain in their jaw- or TMJ- at some point of their life. A lot of time, the jaw will heal itself with time and a little help. However, it's not that easy for others. There still isn't a lot of research about TMJ disorder and such, so the ways we treat it often have little scientific evidence to support it. Usually, prescribed treatment is a soft food diet, jaw excersises and stretches, splints, avoiding large jaw movements and overuse, and heat and cold therapy for six weeks. Many doctors are reluctant to go past this because it can be reversed. However, what's...