Monday, 30 September 2013

Arthritis Acne

As a teenager, there is one topic that is extremely unavoidable: Acne. It was bound to come up sooner or later. I thought it might as well be now.

I may be in my late teens, but I still have acne. I know it's fairly common to have it into your twenties or even older, but still. And it's no fault of my own that I can't get rid of it all: I've done my research and gave evey wash or medicine a fair chance of at least three months. I don't eat excessively greasy or sugary foods and when I do, I don't go overboard. And I'm one of the cleanest people you will ever meet. So why do I still have acne?

Arthur. Yes, once again Arthur is responsible for yet another unpleasant thing. Whilst I'm unsure how rheumatoid arthritis affects acne, it has been said that psoriatic arthritis can cause acne break outs. It makes a lot of sense because I've gone without an acne wash for a month to see how my skin is, and there's little change. Well, that's a lie. Due to some recent problems, I haven't had Enbrel in two weeks and this week I'm breaking out. My skin was great on Enbrel because that's what suppressed my immune system and thus Arthur. I've also been very clear during times Arthur was under control but broke out horribly when he acted up. I've also talked to others with the same problem and it seems to be the same routine.

So what can a person do? Honestly, I don't really know. We're still not completely sure about the connection of acne and arthritis. I'd say that taking your prescribed DMARD or biologic should help, since they surpress the disease that causes it. If your not, trying differen washes would be a good bet: I recommend ones without benozide peroxide because they're easier on the skin, but it may work for you. Psoriatic arthritis acne may not just stay on the face, it may cover the body. This is harder to treat, but there are a few things you could try to help. Make sure you change your pyjama shirt every night and change your sheets and pillow case very often. It may also help to use unscented soaps in the shower and use warm water rather than hot water.

It's a little known about thing, but trust me when I say that if you have arthritis and have acne that flares as the arthritis des, you're not alone. Not at all.

Friday, 27 September 2013

Tendinitis

I've always had arthritis. Okay, since I was about two years old I have had it. The odd thing about not having a proper diagnosis until a few years ago is still puzzling. Especially because of what my mum went through for years trying to get someone to take her child's medical condition seriously. You see, there were quite a few things that weren't exactly 'right' in my medical life for a number of years. Being diagnosed with tendinitis is one of them.

I've had the privilege of being able to have access to some great hospitals. One in particular was called the 'best paediatric hospital ever' or some rubbish like that. I'd been there with disappointing results in the past, but we hoped I would be different this time. I was about ten years old, with no diagnosis and a flare that required hospitalisation for a week just two years prior. All signs pointed to juvenile arthritis.

Tendinitis. The world class doctor walked in, sat down, scanned my chart quickly and announced "she has tendinitis." He said ibuprofen would do the trick, wrote a note saying I could limit what I do in gym class and sent me away. World class treatment, eh? I know that in psoriatic arthritis, tendons may swell but I don't give him credit for noticing. Mostly since he didn't touch me and didn't have any X-rays or scans to reference.

Diagnosis is a difficult thing. It can take years to be heard (it took me about ten years). Don't give up in finding answers! You can't make something better until you know what's wrong. And don't let them dismiss you as normal; Normal isn't painful. You can't fix normal.

Tuesday, 24 September 2013

Rheumatologist Dating

Your hearts racing, palms sweating. They'll be here any minute, and you're very nervous: After all, They could be the one. It's the first time you two will meet, and you hope sparks fly. This could be the perfect match, or the worst.

It's remarkable how choosing a rheumatologist is like dating. No two are alike, you get to know each other after time, you'll always remember your first, there might be lots of break ups, and somewhere out there is "the one."

Seeing a new rheumatologist is almost always overwhelming, especially if it's the first time you're seeing them. Unlike your GP (primary doctor), you will (probably) see them more often than once a year and ocasionally when you're sick and need help. You will get to know your doctor, just give it some time and don't be discouraged. What matters at the very start is that they get on the right track of diagnosis or treatment if you already have a diagnosis. The first visit will probably seem quick or confusing and you probably won't understand the doctors mannerisms yet. If they don't take your seriously from the start, don't bother and find another. However, if they seem to be on the right track, it will be worth it to stick with them. Beginning treatment with them may be your best bet as well. The first visit tends to be brief whilst the second seems to be very thorough, of course it could even be the third if there are even more issues to try and find the bottom of.

I broke up with my first rhuematologist. I stayed with him for about a year and a half. He didn't diagnosis me compleftely, I forget if He said I had JRA or just JIA. I think that was because most of his patients had JRA. The main cause is that we didn't Always see eye to eye with treatments- he didn't mind that I was very ill on some medicines so long as I was taking them. It was just best to move on. I had been lucky and met another rhuematologist on a day my rheumatologist wasn't in. This was the one I moved to and we've been together for almost four years. It's been a wonderful fit, especially since my currency rhuematologist is more experienced with more kinds of arthritis and autoimmune diseases.

Don't give up. There is a doctor out there who will help you greatly and never leave you. It's just the matter of meeting.

Saturday, 21 September 2013

"What's a Flare?"

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 swelling to be in a flare?" "How long do I have to have increased symptoms for it to be considered a flare?" I can guarantee many a new and old patient alike asked these questions, just as I have. Honestly, I don't think there are any answers to these questions: they vary because our disease is different, just like we as people are different.

Even though I have an increase in pain and stiffness right now, I don't consider myself to be in a flare. That's probably because I was on my way to a 7:30 class at 6:50 yesterday. And because I have no real choice at the moment than to just push on. I know how severe my pain can get, and I'm thankful it's not even close to it. For me personally, I couldn't say I'm in a flare unless I was extremely ill. Of course, that's me personally. For you, that's completely different. You have a different level of pain from me; our diseases may be similar in nature but they're not identical. That's impossible.

If you find yourself in a flare right now, I wish you luck and gentle hugs- Flares are so stressful and painful, I can only imagine what you're going through. I know you'll make it through: You're very strong for battling this disease.

Thursday, 19 September 2013

Autumn Arthritis Help

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. Try different teas, since tea is very good for you. My personal favourite is black with orange zest (it makes it sweet, but not too sweet).

3. This is the time of year colds spread rapidly. In my school, almost everyone is or has been sick or just not felt right: We're quite a mess, especially in the mornings. Consider getting a flu shot, especially if you're taking immunosuppressants- any cold you get will take twice as long to fight or may get worse, and the flu would be horrible to catch with a low immune system. Wash your hands frequently and keep them away from your mouth, eyes and nose. Carry around tissues in your pocket, not only is it good in case your get a runny nose (like me) but if someone around you is coughing without covering their mouth, you could hold the tissue to your mouth and nose as a precaution.

4. Fuzzy socks. Honestly, wear fuzzy socks whenever you can. They're stretchy, easy to use with sore hands, gentle on sore feet and keep them warm and cosy. I tuck my pyjama bottoms into my socks at night so my ankles don't get cold.

5. Stretch! Don't stop exercising because of the cold! Bring outdoor exercises in, if the weather is too much to handle. It may help to exercise in warmth anyway since your joints will be less stiff than in cold. I've been doing volunteer work a lot recently, and it's really helped me keep in shape and exercise indoors (a lot of walking and bending).

6. You may have to take more NSAIDs or other pain medication as the weather changes. I know I need to. Keep track of all your meds and take them regularly. Even if you feel good, take your meds: It'll be easier to take them now and feel good later, than feel bad later and have to wait for your medicines to work (if you even have access to them!).

7. Wake up gradually. For me, I can't wake up and go (unless I have to or wake by myself). So I set my alarm clock to go off 25 minutes before I need to get up. It goes off ten minutes apart. The last five minutes I try to stay awake and just think about the day ahead and relax so my body isn't as achy. At the end of the five minutes, my radio goes off and I start the day with music whilst getting dressed. It may work for you, especially if you find it hard to get up in the morning.

8. Be careful! I've been stiffer lately, and I've been losing my balance and footing as a result. I imagine I'm not alone in this. Please be very careful!

9. Students, try not to overload yourself with books. Ask teachers if you can have a book for home and one for the classroom. Don't take anything that isn't necessary. And I know it's not always fashionable, but bags with thick straps will save your shoulders- very wise advance from my rheumatologist.

Fall is a beautiful time! Enjoy the traditions of the season, it only comes one a year after all! Happy Autumn!

Monday, 16 September 2013

"Courage is Not the Absence of Fear"

  "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear." -Nelson Mandela

I know so many people who are chronically ill: Through this blog and in person. It is through them that I've seen more courage than some will see in a lifetime. Most people think a child wouldn't need courage through illness and in hospitals because treatment isn't optional when your parents consent and hold you down. But it's true, especially when your disease is ongoing. Children, teenagers and adults show a lot of gumption in times of illness. Often times we develop many fears because of the uncertain nature of these illnesses. They battle this fear because living scared is no way to live at all. They face the fear of pain and scars and go through procedures because it might be better later. They face the fear of needles and side effects and take chemo and immunosuppressants because the pros outweighs the cons. I've watched children willingly take on their fears and submit themselves to pain because they hope the outcome will work. There is courage in this world. I've seen it first hand.

     Courage is not the absence of fear, rather the triumph over it. Fearlessness is not courage: A person without fear does not need to battle to face some thing, they can simply face it without a second thought. Doing something that has nothing to fear in it doesn't seem very important. It's when there is fear or danger in doing something for good that is there courage. I can only imagine nothing would be truly of value in this world if everyone was fearless, and courage was never needed.

Thursday, 12 September 2013

Exercise to Help Manage Juvenile Arthritis

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 talking to your doctor physio/physical therapist first. They should be able to help you decide what you can and can't handle, and may be able to teach you appropriate poses. I don't recommend trying anything by yourself: it is easy to hurt yourself, especially with painful, stiff joints.

I used to swim a lot. I haven't much in the past year because I haven't had much time, but I used to swim once or twice a week. I highly recommend exercising in water: it's much easier on your joints and strengthens better than on land. I found that the swimming really helped me. If you have the opportunity to swim, I highly recommend it. If it's an indoor pool, that's even better because it may be heated (or at least room temperature) and that will help relax your muscles. It's probably also the safest exercise option for people with arthritis because it doesn't put as much pressure on your joints the way being on land does.

Mostly, I've found the best way to help control my arthritis is by walking and riding my bicycle (when possible). Since there is little way to avoid walking, by walking more often it can make it more tolerable. I do things like getting off my bus a sto early or walk to the shops to try and sneak more walking into my day. I also use to use an exercise machine that mimicked stairs to help make stairs easier. By strengthing muscles we often use, our everyday weakness and pain could be eased.

Any exercise is good for you so long as it's low impact (so tennis or running wouldn't be a good idea). Whatever you do, make it enjoyable so you'll want to continue. Also, stay safe: keep hydrated and don't push your limits. If your body says stop, stop. And start slowly if you're not used to working out: Do 15 minutes of whatever you choose for the first few days, then 20 and work up as you (and your doctor) finds appropriate. Sudden changes to your life style like a sudden strenuous work out can cause a flare: you need to build up to longer or more strenuous work outs.


Tuesday, 10 September 2013

Diet to Manage Juvenile Arthritis

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 without extra ingredients like butter or excessive salt. The basic 'arthritis' diet is a diet that is full of anti-inflammatory foods with few or no inflammatory foods. It's true that some foods affect our inflammatory levels more than others, and any reduction in inflammation can greatly. There is tons of information out there about what types of foods raise inflammation and which decrease them, so do some homework and see what you can swap out in your life to help!

Many people swear on a gluten free diet. I've heard it doing miracles and doing nothing. I would like to say right now that I have no personal opinion or experience with gluten free diets for arthritis: I've never tried it. I do have a friend with celiac disease, so I do have some insight into the diet changing lives. However, I don't want to go too into the subject. I just wanted to bring up the subject for anyone interested in looking into it.

There are many other diet changes to look into to! I've found personally that I cannot handle too much citrus, whether through a fresh source or otherwise. After I found myself particularly sore and painful a week after having citrus foods 1-3 times daily, I stopped completely for about two weeks. I found myself feeling much better. Though I still enjoy citrus fruits a few times a week, it's nowhere close to what I was doing before.

And as always, drink plenty of water. Our bodies are seventy per cent water, and they work best when we are hydrated. I'm horrible at remembering to drink, and recently someone came up with the ideas of setting alarms on their phone to remind them to drink something every two hours. I highly recommend it! Also, if water isn't a particular favourite, you do have other options. Tea tends to do wonderfully for those with arthritis, especially green tea. Also, fresh fruit and vegetable juices are very good. Eating foods high in water like watermelon and celery are good options as well.

Monday, 9 September 2013

Embrace the Imperfect

Originally I had another post planned, but last night a friend shared this video from YouTube and I had to share it. I feel that it's very important to not only those who are chronically ill, but everyone.


I know some of you won't take the time to stop and watch- I don't blame you, I have tons of things to work on too and don't always have the time or ability (ex. Whilst using a mobile device) to watch. Thus, I'll tell you.

A man named Phil Hansen wanted to become an artist and went to art school. Unfortunately for him, he was unable to draw a straight line. Phil's hands would constantly shake. He kept trying though, and would clutch the pen tighter and tighter to attempt to steady his hand. It didn't work, and caused him a lot of pain. Phil would drop out of art school and gave up on his dream of being an artist. Later, he would see a neurologist and was diagnosed with nerve problems, making it obvious why he could only draw bendy lines. When he told his doctor this, his doctor said,

"Why not embrace the shake?"
That's what he did. Phil made wonderful pictures with squiggly lines and odd shapes. Later he found different ways entirely of making art: Using his feet, doing karate chops, and all sorts of great ideas. Phil found a way to do what he loves despite his obstacles. He doesn't want to be perfect: He wants to embrace the imperfection.

It's because of people like Phil that I have confidence in doing art despite my obstacles. I hope you never give up on your dream despite your obstacles.

Saturday, 7 September 2013

One of My Heroes


Recently I was asked who one of my heroes is. That got me thinking about the true meaning of a hero. I'd like to share my thoughts on heroes, as well as one of mine.

For lots of people, a hero is a firefighter carrying a small child out of a burning building. Others choose to recognise politicians, athletes and scientists as heros. For me, it's not always the actions that define a hero: It's their admirable qualities, that often lead to these brave and moving actions. As a teenager, it can be difficult to find people- heros- to look up to and who are relatable. Which is why Hank Green is a hero to me. Hank is a famous YouTube Star, most notably known for collaborating with his brother John for the Vlogbrothers. Hank also has his own line of channels and series celebrating his love of science and Jane Austen novels.


My hero is a self proclaimed nerd. I admire that he is simply says what he means and doesn't care what others will say about him. His confidence is a gift in the world where many don't quite believe 'knowledge is power.' If he didn't have the confidence and bravery to put out his ideas, many great creations (such as the Lizzie Bennet Diaries series) would never have been shared with the world.

I also find Hank a hero because he goes out to educate others, especially the youth. He takes it upon himself to tell people the straight facts and inform them of global situations, however leaves it up to the viewer to form their own opinion. I admire that he wants the world to be aware of situations that most, especially young people, would not be aware of otherwise.

In addition to all of that, Hank deals with the chronic illness Chrons disease. I am amazed that he lives with the pain and problems of such a serious disease, and yet goes out and does so much to educate the world and make others feel less alone in their interests. I admire that he is so open with his disease, because I know how hard it is. I can relate to many things he has said about being sick, which has made me feel less alone too.

There are billions of people on this planet. Some are considered heroes, and even held up high as one. However, I see everyday people do wonderful things everyday. Even though no one else would, I consider them heros. That's why Hank Green is one of my many heroes.

Thursday, 5 September 2013

Walking From Depression

Lately I've been trying to cover the topic of depression. This week I posted Medication Depression, and much earlier I talked about My Arthritis Depression discussing the hard time around my diagnosis and early treatment. Today, I decided to talk about what helped me get through it. These things may help you. If you are depressed, please reach out for help: We can only help if you want it. These tips will not get you through it completely; they're merely small tricks to make it easier at times.

Everyday, Have Look Forward to Something.

Having something to look forward to helps keep you positive. Long term goals are excellent- Promotions, awards, holidays, birthdays and such are great. Short term goals and little things work wonderfully as well. I'm looking forward to the release of the last book in my favourite series in a few weeks, I'm looking forward to seeing some friends tomorrow, I'm looking forward to wearing my favourite winter clothes, and all sorts of small things. One time I couldn't sleep because I was looking forward and felt excited to be having breakfast with a friend that morning! Having something to be happy about and hold onto to helps you keep a positive attitude.

Surround Yourself with Pleasantness.

Recently I spent a week with my niece. With that comes programmes for children. I was surprised at how relaxed they made me: I forgot children's programmes lack severe drama and always have a happy ending. Whilst I don't recommend you watch children's television, I do recommend surrounding yourself with happy things. Television and film comedies, happy books, upbeat music and jokes help you keep upbeat. It may be hard to avoid grumpy school mates or coworkers, but listening to a comedy show on the radio after may help.

Understand You're Not Alone.

You're not alone in depression. Many of us with autoimmune disease will become depressed at some point, and all of us have low points. It's okay: you're not weak and it's not in your head. You did nothing to cause this. Please reach out to someone who can help, I promise you it can make the difference. It's nothing to be ashamed of: I've done it. Many of us have. You can do it.

Tuesday, 3 September 2013

Medication Depression

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 experienced depression (as I talked about in My Arthritis Depression). Once I stopped taking methotrexate, I became very happy again. After a break, we decided to try it again. As well as depression, my mood could change in an instant. I would sometimes burst out in tears over nothing, and could quickly become angry or frustrated over something minor. That's a hard way to live, so that  ended. Later that year, I began Enbrel. I haven't experienced any mood changes, thankfully. I probably just jinxed myself, since mood changes can happen on Enbrel too.

If your mood seems to change when you take a certain medicine, it could be a side effect. Though it doesn't happen to everyone, it is possible. Of course, it could be something completely different. I'm not trying to suggest that any mood problems are the medicine's fault: I'm saying it's a constantly overlooked side effect. And I'm not by any means saying you shouldn't take medicine because of the  small possibility of this side effect: I encourage you to take medications that you and your doctor decide could help! You never know what may work until you try! Of course, in autoimmune disease, it's very easy to become depressed. If you feel sad, please reach out for help. It can't get better until you ask for help.

Sunday, 1 September 2013

School Pain

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 campus may be most painful for one, but for the other constant one constantly taking notes may be the source of most pain.

Whether school pain is just beginning for you or has plagued you for the past few weeks, there are a few things you can try:
  1. If writing is painful, try using grips or thick pens. If you're allowed, bring a laptop or iPad for note taking and essay writing- it could be much easier.
  2. If your supposed to be carrying around heavy books, ask if you can have a book to keep at home and a book to keep in the classroom.
  3. Use a bag with thick straps.
  4. Eat protein with breakfast: It will help keep your energy and strength through the day. An egg, toast with peanut butter and yoghurt are excellent options.
  5. Find shortcuts wherever possible. Give yourself enough time to walk. If you find yourself late, or nearly late, for classes talk to your teacher- they may understand and will give you an extra few minutes.
  6. Go to bed early and try to wake up early. It doesn't sound appealing to most, but going early means you are more likely to get the amount of sleep you need. Waking up early allows your body more time to ease stiffness. Consider timing a heated blanket to go on one hour before you wake up, or pop your clothes in the dryer for a minute before putting them on.
  7. Wear sturdy, well broken in shoes. I know it's tempting to wear your newest shoes, but break them in at home first. Wear shoes that are comfortable for a long day: your feet will thank you.
They may be simple, but they can help a lot. Lots of young people are going back to school soon, or have already been in school for a few weeks. Arthritis pain should never stop the learning and friendships school gives us. 

Good luck, and try your best.