The Girl With Arthritis

"Call if anything changes," my doctor will say at the end of my appointment. Hearing that is such a friendly reminder. Having a good relationship with your rheumatologist is vital for anyone with arthritis. It's so important to be able to reach out and get a response when you need help. But, when you live with psoriatic arthritis (PsA), that advice can be a little challenging... Click here to read the full article at Psoriatic-Arthritis.com.

 This month, I've been binge-watching Call The Midwife. I picked it up again after missing a few seasons and have thoroughly enjoyed it. Through the happy and sad tears, my favorite part is how much the sisters and nurses care for their patients. Sometimes, I wish I could be their patient! It's not the first time I've wished to have the medical teams I see on TV.  Click here to read the full article at Psoriatic-Arthritis.com.

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 ...

Lately I've had incidents of my fingernails and toenails turning blue. It's not as if the skin was blue, which would be terrifying, but it was still a little concerning. I brought it up with my rheumatologist the other day and showed him numerous pictures I took of it. After he examined my fingers and toes and felt how cold they are, he gave me a diagnosis: The blue was caused by me standing or sitting up. The treatment? Lie down. Best treatment ever. I took this with a grain of salt. Lie down every time? I can't wait to lie down in class, on the train, randomly in stores. It's literally a dream come true. Doctors really don't get it. They don't listen. Even the best of the best can be dismissive sometimes. I really like my rheumatologist and I've been with him for years, but sometimes he's just a pain in the butt. Did not listen to me explain that it happens when I can't warm my fingers or toes? It's obvious I probably just have a very mil...

In autoimmune arthritis, there are tons of treatments you can try- from DMARDs to diets. Okay, there aren't tons,  but there are several treatments out there. You might be lucky and find that your first pick gives amazing results. But, more often than not you'll try a few. I did, and it took a few years to find what works best. To be honest, it should've happened earlier. My first rheumatologist liked to stay with one treatment, regardless of what happend. I remember one DMARD made me extremely ill for the month I took it, and I later learned that they were extremely serious side effects. Towards the end of my two years with my first rheumatologist, I wasn't feeling well at all with Methotrexate and we weren't seeing any improvements. That's when I asked my doctor "Isn't there anything else we can try?" He sighed and I remember his exact words: "We would be going to the next level after Methotrexate, and you don't want to get to that...

"How are you doing?" This is a question that doctors and nurses often ask. 'Same as normal'- my normal, not a healthy person's normal. It's just the life I got use to. It's this life where pain is constant, and that's accepted because we have no cure. When other people ask me this, sometimes I know they care. And that's great- I can't thank them enough and I'm very grateful to have them. I know that they want to hear good news, and sometimes I have it and I'm happy to share, but a lot of the time I don't. Unfortunately, it feels like they only want the good news, because otherwise everything is depressing. And I feel guilty that I can't give them the news that they want to hear, so I tell them 'It's alright.' It's not a lie because most of the time I can manage. Even then, I see the whole hearted smile fade a little bit because I didn't say 'I'm cured.' Others really don't care. And that...

I am quite aware we all have our own struggles with chronic illnesses. But I'm sure we are not too unique in the case that we all have experienced a long day of medical care. Whether it's infusions that take several hours, test after test, bad news and more bad news, or appointment after appointment, I'm confident when I say we've all been there and have done that. Recently I had a very long medical day. I wrote down my emotions and thoughts as the day went on so I could share with you later. 7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off. 7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by. 8.29 am, The little cafe near the hospital has the best eggs ever. That and a gre...

Now, I'm not a doctor and I'm not telling you what you can or should do. Don't take it to heart. Talk to your doctor. "Can I still drink with a chronic illness?" A question muttered in many different forms by many different people. And the answer is almost always yes. In the case of arthritis, you certainly can. It's not so much the disease we worry about alcohol affecting as much as the medications. Many medications do carry risks when it comes to alcohol. NSAIDs are usually safe to drink in moderation, of course ask your doctor first. DMARDs like methotrexate are popular in treatment. Some doctors tell you that it's fine to drink, but to limit it. Others tell you to avoid it like the plague. It's mostly concern to protect your liver and kidneys. With biologics, it may be the same story: you might be told you can drink, you might not. Only your doctor knows what is best for you. Me personally? Well, I was about twelve when I started methotrexate a...

"How do you get a doctor to listen to you?" This is the ultimate question. The answer is so rare and secretive, that is it priceless. There is just one secret statement that will make a doctor listen and that statement is.... Well. It's more complicated than that. It's hard to believe but doctors are real people. And like the general population, their personalities differ. You're going to get along with some and you will not with others. Some people are introverts and others are extroverts. We all have our good and bad days. Doctors are like teachers: You loved some and hated some, some loved you and others didn't. And it was for many different reasons. Some saw your potential, and others passed you off as nothing special. And it doesn't mean much at times. For example, Teachers said John Lennon would go nowhere. It's the same basic idea with doctors. First, we have to realise that some people are better at listening than others. This and other p...

I think there is a lot of communication in the world. Cellphones have made it so an individual can be reached in a moments notice. The Internet has made it easier than ever to be connected with others from countries half way across the world from you. We even have more travel opportunities than ever before. However, as much as we would like to say people communicate more wisely today, we really can't. Our communication can only go so far. In the medical world, communication is a very complicated thing. It can go several ways and is different for every person.  A patient may be in extreme pain and can express that pain, but for whatever reason that pain may not be  received by a nurse or doctor. A doctor can recommend a treatment, but a patient can reject it without hearing the explanation of why it's needed, the consequences of not having it, and the benefits. A doctor or nurse may not communicate with a patient or quickly dismiss them. And there are many ot...

I've never had braces or splints before. But there's always a first time for everything. To put it bluntly I may need a back brace. My spine is somewhat curving due to the arthritis, so a back brace may help. I won't know if this is the case for about three months. It's taking so long because we're going to try correcting this problem from the start- of me, anyway. I'll be trying orthopaedic arches in my shoes for a while, to see if that's what is causing the curving as well as some of the pain I experience. Due to being flat footed as well as having knock knees, I may be in more pain than Arthur is actually giving me. However, if that doesn't help my back I will be getting a back brace. It isn't actually a traditional brace, it's more of a wrap around my tummy. The doctor told me its mostly for when I need stability when lifting heavy things (or in general) and for when I'm in pain. It doesn't sound too bad: since it's a wrap...

Confessions of a teenager with arthritis. 1. I am embarrassed. Embarrassed of my knees, my weakness, stiffness, pain, and most especially my limp. I don't want to bring attention to my legs or be the only person walking in the corridor, and I truly hate that my face gives away pain. 2. I know people think I'm faking, and why wouldn't they? I'm a seemingly healthy, young lady and I must obviously be looking for attention. Even doctors are suspicious and every time there is a fluctuation in my weight, I know they instantly suspect eating disorders. It couldn't possibly be the new medicines. 3. It's hard to relate to kids my own age about a lot of things: you don't realise it, but chronic illness changes a lot in your life. I talked about this in my post 'Arthritis Normal.' A lot of kids my age think its odd that I take my time getting where I need to and that I don't enjoy parties, as well as other things. 4. As much as I would like to be i...

I haven't had a flare up since I was about eight, so rest assure that was a long time ago. It was also my only flare. I was in hospital for about 8 days due to it, but it was actually about two months long. At its peak, I had such a high fever I hallucinated a couple times. I actually didn't get diagnosed until a few  years later. I am very lucky, and I am grateful for that every single day Paediatric chronic pain, as well as adult pain, seems to be dismissed faster and takes longer to diagnose. Sometimes I wonder if doctors just think children are crying for attention or that parents are exaggerating or looking for attention. I know that a lot of people only believe in what they see and if there is proof. For doctors, it's no different. But sometimes I wonder if they have clouded vision when something such as pain is blatantly present.

I'm in a bit of a creative mood at the moment (though obviously not creative enought to create my own title). Today, as I sit and watch a medical series on television, it occured to me that the things doctors say make for some great entertainment. Just like what I'm watching: A man was brought into hospital but refused treatment. The doctor spent a long time trying to convince him that he needed immediate treatment, but the man refused. Walking away, the man collapsed and as the nurses were putting him on a gurney, the doctor said "You're all mine now." "You're all mine now." That sounds more like a mad scientist than a doctor. I think I would've been horrified if I were that man. Things ever said to me include (but are not limited to): "You better make sure the Methotrexate starts working soon." (I'll be sure to let my immune system know.) "Nothing appears to be wrong." (Oh really?) "I don't believe th...

I'm actually writing this as I try and begin an art project (just a painting of a kitten), so please bare with me. I think it's funny how people have to take medicine to care for the side effects of the medicines that care for the symptoms of a disease. I remember taking one NSAID that caused me headaches, severe light headedness, fatigue, muscle ache and later extreme nausea. The light head feeling was so bad that I would tip my head upside down and cover it with a pillow just to feel like I actually had blood in my head. I ended up staying home from school for about a week, with that weekend being filled with- to put it bluntly- vomit. I think the worse part about this all, was the doctor kept telling me to push on. I actually ended up in way more pain from the medicine than I ever have from the disease. My mum, being the smart woman she is, took me off of it after I couldn't move. And me, being as stubborn as ever, eventually fired that doctor after two years of him ig...

My visit to the hospital yesterday was a rather good one, I'd say. I'd like to start off saying that Enbrel has definitely helped, and it showed in the fact I showed more range of motion just about everywhere and I have slight pain reduction. Two great, promising things. A 5% improvement in just a few weeks is great hope. Sometimes people tell me that hospitals as depressing. I don't really look at doctors and hospitals to be something to be depressed about. I rather like my doctors, nurses (most of them anyway), technicians, and the other patients and families I meet. We laugh an awful lot and have great conversations. I know getting your blood drawn is unpleasant, but it doesn't have to be completely unpleasant: A great phlebotomist and conversation can really make it 95% better! But anyway, my mum and I tried a new restaurant afterward. Even though we hated it, it was great that we got to go out and try something different. We did some shopping and had a great ...

Today's hospital visit was mostly great. I found that any crystals once in my kidneys had flushed so my kidneys are fine. Also I was prescribed Enbrel to treat my psoriatic arthritis, which I am positive about. My rhuematologist and neprhologist (Kidney doctor) have been working very close together to ensure my kidneys will not be damaged with all the medicines. I'm very grateful to have two very caring doctors. However, there were rather unhappy moments. This morning I needed a kideny ultrasound, which seemed to be fine until the technican began to appear uneasy. He left for a moment and came back with two doctors, who were all worried about something not appearing healthy. It's a very scary and vulnerable moment to have several doctors stare at your results, practically ignoring you because whatever is on the screen is scaring them beyond belief. It seemed to be nothing, thankfully. Another rather unhappy time was when my kidney doctor immediately had me seen by anoth...

Tomorrow I shall leave my school and friends. For I am going to the hospital. Again. It's actually a day filled with various appointments, so hopefully I'll bring nothing but very good news. While I'm seeing my usual rheumatologist, I'm also seeing my kidney specialist to determine correct treatments for my current kidney affliction (Calcium Crystals). I'm trying to stay positive that everything will be just fine. Also tomorrow I may be put on Enbrel, an immune surpressant. I'm nervous as some of the side effects don't seem too fun. One risk while taking Enbrel is a higher cancer risk, however this doesn't bother me as much as the higher chance of appendicitis (which requires an emergency operation to remove). I'm not so much worried about actually getting appendicitis and being in a lot of pain. More so, I've been laughing and joking with my friends saying I'll get it while walkiing in a crowded corridor at school and people will have ...

I went to the rheumatologists yesterday. I can say that was  easily one of the worse visits ever. Due to weight loss in such a sort period, I've been taken off of Leflunomide. Rather, I've been prescribed Enbrel and since I will be going on holiday soon, I will not be starting for several weeks. It will be two injections every week. Thankfully I have several arrangements where a nurse will  be able to give me them, rather than do them myself. However I will most likely learn to inject them myself in case I'm never able to get to a nurse or whoever, or if I get confidence enough I'll just do them myself. Leflunomide, however, seemed to be working quiet well besides the worrying side effects. Also, both my regular nurse and doctor seemed concerned about my heart rate, which was a bit high. In fact, the doctor was so concerned I was sent to get an EKG. Though my heart rate was elevated, it wasn't too concerning.

Many times doctors and nurses are able to help people recover from diseases. Sometimes doctors and nurses can't help you and they want to. There's no cure or pain relief for some diseasees. A poem that was about a young child with cancer put it "The worse part about being in the hospital, is that they give you all the ice cream you want because they know there is nothing better they can do. Ice cream can't make things better." And it's true. People who are terminally ill often have their wildest dreams and wishes granted. Kids with arthritis, epilepsy, and such often have camps and fun days devoted to them. This, they feel, is the best way to treat a person because when giving them a cure isn't possible, giving them happiness is the next best thing. I don't see this as a bleak thing. I see this as a life lesson.