Wednesday, 31 July 2013

My Arthritis Depression

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 didn't work for me, and the side effects were horrible: everytime I saw my doctor he told me that I had 'better make sure the Methotrexate was working.' Despite that, my grades were perfect. But I had to quit all my school clubs and was absent from school quite frequently because I was always seeing doctors. When I was in school, I felt sick and cold all the time. Nobody wanted to be friends with the sick one and I lost all my friends that yearSeveral teachers enjoyed to pick on me as well, one going so far to say that people who require constant medical treatment are likely to become addicted to drugs. I rarely talked and took to independent things like drawing, writing and making music. That helped a bit, but I was still depressed.

It was summer when my doctor made me see a consular. I only saw her once because she told me that I needed changes in my healthcare before I would start feeling better. I immediately switched doctors and stopped methotrexate. That lifted the weight of the world off my shoulders and I started feeling good again. My new doctor realised that I needed friends just as much as I needed new medication, so he got me involved with the Arthritis Foundation. I got to meet tons of other children with arthritis, which was fantastic. I also started a new year in school with new found confidence and began taking art classes: I gained so many new friends there. Starting this blog brought me to many of the most amazing people I could ever have imagined.

I've done it alone before and I never want to do it again. I have so many people who are right there with me. It fluctuates sometimes, but I have a steady few and that's all that matters. There are some who say they're there for me and care and stuff, and I know that's not true. There are others who say nothing but seem to be there when I need it. There is family who couldn't care and strangers who cared so much. And then there are the people who have gone through it (or are going through it) who are there for me (as I am there for them), and I have a special place in my heart for them.

There are a lot of factors in our emotions. If your experiencing extreme sadness, please don't hesitate to reach out. I wish I did much earlier. You don't have to go through this alone. There are so many resources out there, whether online or in your community. You are very strong to deal with this, but I don't think anyone could handle it alone. I shared my story so no one would think they're ever alone in these emotions: These feelings are not a sign of weakness at all, it's a sign of all the strength you have. No one will ever be happy, upbeat and positive all the time.  Please, don't try to do it alone.

Monday, 29 July 2013

About the Chronically Ill Teen

What do chronically ill teenagers do for fun? We listen to Alex Day, read Divergent,  and watch Vine videos. We also like to play extremely violent video games, act way too old for ourselves and make adults squirm with our music, but that's a story for a different time. All too often, I think people are put into a group. The groups that interest me the most are young adults and chronically ill young adults, as if there is a huge difference.

Alright, I admit it; there are times it shows that one hasn't any health concerns. Like when one can put on skin tight jeans and the other can't because of swollen joints. Or when one can go the whole day nonstop and the other struggles. And even when one can make 'risky' choices and only worry about getting caught, when the other can't because there is too much that could go wrong as well as getting caught. But honestly, there isn't much after that stuff.

I might have arthritis. I might go to the hospital more often than I'd like to admit. I might deal with chronic pain. But by no means am I as old as my body feels. I will put on cute clothes for no reason. I love when boys give me a bit of attention. I can't help but get excited over a new Disney movie. I know all the latest gadgets. And I love getting to make a day into an adventure.

Teens with chronic illnesses just have more responsiblity. We just may be more mature because of it. We've gone through a lot and have strengths that others won't until they go through the same. I'm not an adult. I'm not a child. Don't treat me as either. Treat me as a teenager.

Friday, 26 July 2013

Our Worries

If there is one thing I know, it's how to worry. I worry about if Arthur will affect more joints, if he will flare, if inflammation is anywhere other than my joints, if the Enbrel is working, if the Enbrel is hurting. There are so many more thoughts that swirl around my head at the oddest of times. Usually when my mind is needed elsewhere do the most serious worries come, and when the saddest worries come I'm usually in the least appropriate place to cry. And don't get me started on the thoughts that come when I'm trying to fall asleep.

I've been reading a lot lately to try and distract myself: it seems the only time when I'm safe from the clutches of worry. In fact, yesterday I started and finished a 550 page book. Alright, it helps that it was a book I was dying to read and that I'm a speed reader. But the point is, it was nice to have something else taking up my mind rather than all the worry. I feel like as a young person, I should only be worrying about things young people worry about rather than health problems. But I get to carry the burden of both and so do thousands of other teens and young adults all over the world with chronic illnesses. It's honestly no fair- as many others have said before me, and many others will say after.

I guess this is my way of telling you that things aren't as great as they could be. I'm not flaring and the Enbrel is doing fine, but other things are coming up. The worst thing about it all is that we're not sure what's going on and we really don't have the answers yet. A lot of worry goes into what I already know, but when you don't know everything it leads to worrisome curiosity. A select few family and friends who know what's going on have told me to try not to worry much about the situations at hand, but how can't I worry about something going on in my own body? Maybe if it was their body I wouldn't worry so much and just nonchalantly tell them "try not to worry," but I highly doubt I would actually do that.

I can't offer much advice on dealing with the worry of having a chronic illness. I really wish I did. I think it's healthy that we worry though. Maybe it doesn't do much for our health, but it's a natural human emotion. I think it would be unhealthy not to feel worry- it would be like we didn't care about ourselves. Our worries are not complex- they are very basic at the root. We dont really worry that something can not be fixed- We worry about being in pain. We worry about being kept from achieving our goals. We worry about being alone. In fact, I could go on. But I won't. We all have our worries: It's up to us to figure out why they're there.

Wednesday, 24 July 2013

What's a Jaw MRI Like?

The other day I had a jaw MRI. I've had jaw pain for quite a bit now, but I didn't think much of it: I thought was clenching my jaw due to stress. The pain has been getting worse, so I brought it up with my doctor. He sent me right away for a jaw MRI and I will be seeing him in a few weeks. I went to Google what a jaw MRI will be like but found very little. So, I thought it would be helpful to others to share my experience.

First off, I always bring pyjamas with me. I like my own way more than the silly gowns they give you. Since the machine picks up on metal, it's important nothing you're wearing contains metal. Dental braces and such are fine, just let the technician know. The technician went over a few things and we headed into the MRI room. Some people may get an IV line at this point.

He helped me on the table and gave me a cushion for my legs and a warm blanket since it was a bit cold. I was given headphones to listen to music, but I also could have used ear plugs if I didn't want to listen to music. In the past I have brought CDs with me and they would play those. If you are going to listen to music, make sure the volume is a bit high: the scanner makes noises and it may be hard to hear. The tech then put a coil around my head. More or less, it's like a plastic cage that slides over your face. There are holes in it so you can see through and it shouldn't touch you. I was also given a button to hold, and if I pressed it the techs would know if there was an emergency or if I needed help. Then the bed was raised and was positioned, and into the machine I went.

The MRI machine you get depends on where you go. Sometimes they're open, and I've had one like that when I was about eight. Many are like a big circle with its center cut out. It may look a bit intimidating but it's not. The machine is open on either end, so you will never be trapped. Obviously since my jaw was being scanned, my head was in the machine. This may feel quite uncomfortable,
but try to relax. I closed my eyes, took deep breathes and focused on the music. I had to keep my jaw still, and I noticed this was quite uncomfortable after a bit. I was able to swallow during the scan: it is almost impossible to stop that reflex and I was never told I couldn't during the scan. Of course, everyone's case is different. That first bit was over after about twenty minutes.

 The table was slid from the machine and the tech gave me a syringe and asked me to bite down on it. He assured me it wouldn't take too long, as only few pictures are taken like that. I'm not going to lie; that part was the worse. I tried to relax and try to imagine I was somewhere else, and that did help. The last few minutes where the worst for me because I had a hard time swallowing as well as having a painful jaw. Thankfully that was quick and the tech reassured me through the headphones that that part was done. He came in and fished the syringe out of the coil, which was quite amusing.

The last part was with a contrast dye. Some people get it, some people don't. Some people will get it through an IV and others won't. I got it through a needle, into a vein in my arm. The tech told me I might get a cold feeling in my arm or a metallic taste in my mouth (I got neither). He slowly injected the contrast, which is clear. It didn't take too long and I was slid back in for the last set of pictures. That only took about fifteen minutes and then I was done. The tech took the coil off and set the bed low, and I got to change and go.

MRIs aren't too difficult: it's just staying still is boring, and it's uncomfortable to be enclosed sometimes. Just know that the tech is watching at all times and its a relatively safe test. If you are terribly nervous, some places allow you to bring someone with you into the room. Just ask, almost all the time they will let them come in too.

Monday, 22 July 2013

Frozen Bones

I'm super sensitive to cold. Air conditioning quickly gets extreme for me, pools and water can be torturous and in winter, I'm always bundled up.  I have a hard time trying to explain why I don't like going swimming to others. They think I'm lazy or something, but it's honestly a struggle to build up the courage. I truly want to be able to get in the water and swim, but it's very painful. They don't understand, "yeah, it's cold to me too." So, I started to say it differently now.

"It's like brain freeze in my bones." Literally. It's painful and deep ache to be cold. It tends to get the point across, but people are very insistent of course. I love when swimming pools are heated so I can enjoy the water but otherwise it's completely unpleasant.

Never force yourself into a cold pool. Never let anyone force you. Don't listen to them; you shouldn't have to put up with pain for their enjoyment. If it were them in pain, they wouldn't want to go in either.

Saturday, 20 July 2013

Barefoot Walking

I have the worst time with shoes. I always have and I expect that I always will. It's not a surprise that I go barefoot whenever I can, even when going outside. I have since I was very young too, in fact there were entire summers I never wore shoes unless we were going out. I always thought that was very common with children until recently when I asked other people my age if they liked playing outside with no shoes in the summer when they were little and they said they were never allowed. When I specified and said in the grass in their own gardens, they still said they were never allowed to go without shoes. I once read somewhere that children with disabilities tend to enjoy walking with bare feet and that tends to help a lot in respects to developing arches and balance, and I will never doubt that for a moment.

When I did wear shoes, they were things with plenty of support. I used to get jealous of children wearing unsupportive shoes, because they tended to look cuter. The one time I did wear an unsupportive shoe when I was six years old, I tripped and needed four stitches on my knee. To this day I'm very weary of unsupportive shoes. I wore some the other day in my own house and I needed to get on the floor to do something. When I tried to get up, I got the feeling only unsupportive shoes can give: like your ankle is going to slip out of socket at any moment, and all other joints are about to break. I mean, that happens when I walk too much in them anyway but it was magnified to a huge extent. People, even family, tease me because I can't wear those fashionable little shoes but they don't realise it's because I don't like that unstable feeling. I don't like feeling like I'm going to fall and break  something.

I love the shoes I wear now. I put orthopaedic arches in them for extra support. They have low heels and tons of area for good weight distribution. They're not always the most fashionable thing, but they fit well and I like them. That's all that matters. I like my bare feet, and I like my shoes. I found a good balance. Everyone needs that: you need what will support your body properly and comfortably. It may be hard, but don't give up: your feet have been there every step of the way.

Thursday, 18 July 2013

Benefits of Diet and Exercise to Better Arthritis Flare

This is a guest post by Kishana Sainte. Her bio and links can be found at the bottom. Thank you Kishana!

Arthritis is a debilitating disease that can literally take the fun out of life. Living through pain day to day can make doing normal everyday activities sometimes unbearable. If you are suffering from arthritis know that there are things that you can do to help yourself feel better.

There are certain aspects to life that can exasperate the painful joint swelling associated with arthritis. Here is a look at four reasons why your arthritis flares up and how you can use your diet and exercise to help yourself to feel better. Continue reading to learn more…
1. Arthritis Flare Up Due to Stress: Stress is a major contributor to increased pain due to arthritis. Although scientists haven’t found the exact reason why, experts, doctors and researchers agree that learning effective tools to deal with stress positively affects arthritis symptoms. Certain ways that you can negate stress through exercise is by doing activities such as yoga or meditation. These two modalities have proven effects on the brain, nervous system and body in ridding itself of the effects of stress. Also, cardiovascular activities like walking, biking or running are also highly effective for reducing stress, especially when done outside.

2. Arthritis Flare Up Due to Certain Foods: There are both foods that can increase your arthritic symptoms and others that can help dissipate your pain. Examples of foods that can increase flare ups include cow’s milk, shrimp, wheat, cod fish, chicken eggs, and some kinds of meat. Foods that can help decrease symptoms include fruits, especially cantaloupe, oranges, pumpkin, strawberries, and kiwi as well as vegetables, like kale, sweet potatoes, carrots, spinach, broccoli, cauliflower, and butternut squash. In addition to fruit and vegetables, it is also recommended to use spices such as ginger and turmeric.

3. Arthritis Flare Up Due to Weather: If you live in a cold, damp climate this may be causing you increased pain. Exercise is a wonderful tool to assist your body in weathering the storms. Activities such as aerobics, weight lifting, Pilates, yoga, running and biking all help get your circulation moving assisting your body in reducing inflammation. In addition, increase your consumption of healthy vegetables soups to increase mineral and vitamin intake while at the same time combating the cold.

4. Arthritis Flare Up Due to Overuse: If overuse is a contributing factor to your arthritis pain, then it is imperative to your health to begin stabilization exercises that help support your joints. Examples include squeezing a ball for the hands, plyometrics and weight lifting. Also include stretching or yoga to help inspire proper circulation. Also, increase your consumption of natural anti-inflammatories like green tea, omega 3 rich foods, olive oil, carotenes, vitamin c, and anthocyanins, which can be found in foods like cherries, blackberries and blueberries.


Bio

Kishana Sainte writes on health & lifestyle topics, including rheumatoid and juvenile arthritis on behalf of MyDocHub.com, a trusted online patient recommendation and medical information website developing condition-specific apps such as its Arthritis Flare Tracker iPhone/iPad app.

Monday, 15 July 2013

Confessions of a Former W Sitter

Oh the dreaded 'W' position. A way of sitting that has scared parents, doctors and teachers for generations. Children have found it comfortable whilst the adults around them shift and squirm. What's so big about sitting W?

From what  I understand, sitting W puts stress on the knees, ankles and hips and is typically easier for some children because it requires less trunk strength. It also provides more area to spread weight, making it easier for children with less body strength to sit up. At the same time, it forces the hips to swing out in an unnatural position. There have been cases of hip dislocation and other injury resulting from it, in fact I even had a cousin who's knee popped out after sitting in the W position all day at school.

I was a W sitter. I figured out how comfortable it was when I was about two or three years old. I only stopped when I was about ten years old after a doctor yelled at me to stop. It was the most comfortable for me. I didn't have to struggle for balance and my hips didn't hurt. My femurs (thighs) are inverted, and W sitting is often a symptom of it. No, it is not a result of sitting W style.

Sitting criss cross hurt a lot. My hips didn't stretch like that and I felt like I was sitting on my lower back. Ouch. Sometimes I tried pulling my knees up to my chest but that resulted in a painful spine. Sometimes I tried to sit to the side, but I didn't have the body strength to support myself up. And forget putting legs out straight: unless I was against the wall, I really couldn't stay like that for long. It really affected me in school when I was little- I had a hard time enjoying books, assemblies and games because it was painful unless I sat W. So, W was my only option.

I'm not saying you should let a child sit W or that you should correct it. I am also not saying that they have arthritis as well. I'm just saying I was a W sitter, and I had arthritis since age two.

Friday, 12 July 2013

Arthritis Alcohol

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 and my parents were told "make sure you lock the wine up," before giving a laugh. It has been quite a number of years since then and I haven't taken methotrexate for a bit but the 'rule' hasn't changed much.

Personally, I don't drink. A bit shocking for a teenager, I know. But it's my reality. 'Why?' You may ask, 'With Enbrel you can drink in moderation.' Well, yeah. But I don't want to.

Anyway, a lot of people worry about if their health and treatments may affect their lifestyle. Alcohol is a huge concern. For some people, it's worry if they can have some wine with dinner. Others worry their party days may be at an end. The main concern in all of it seems to be 'am I having another part of my life completely changed? Or even taken away?' Sometimes it reminds me of being little when my parents told  me I couldn't watch a certain programme that I liked or could only have a little when I wanted a lot. Even though it doesn't matter now, it felt like the end of the world at the time. Isn't that how most situations play out though?

Wednesday, 10 July 2013

Rules for Life

Recently, I've been reminded of the rules. They're not fair at all. Then again, what is?

People are not always going to treat you as you treat them. There is going to be favouritism over you. Others will be treated much better than you. But don't fret; So long as you treat yourself well, you are untouchable. Your self worth is a priceless gift to yourself. You are beautiful and never let anyone convince you otherwise. "No one can make you feel inferior without your consent," Eleanor Roosevelt.

There is very little given. You have to take. Don't miss out on anything because it wasn't given to you. Push until you get what you need. Fight for your rights, your needs, your dreams. You owe it to yourself to achieve everything and anything that you could possibly ever dream of. If there is a will, there's a way.

Realise that we will not always have a direct way of solving problems. Sometimes we must wait it out. It may be very painful journey. I beg you to fight and never give up. Fight and give it all you have. Whether it be a long battle with severe arthritis or a car ride home where you are holding back tears because you can't cry infront of the other passengers, fight and never give up. I believe humans have an inner strength that could move mountains, we just don't know we have it until we need it.

You are going to get hurt. Forgive. It's not easy and may take a long time, but try. Forgive. Living in anger will give you a painful life. Memories hurt the most.

I was extremely hurt recently. I haven't been so hurt in such a long time. I forgot that nothing is perfect and no one is perfect. Sometimes I think it's good to remember these things. They apply to life in all aspects, whether its arthritis or with people.

Be brave. Be strong. I know you are.


Monday, 8 July 2013

Arthritis Diet Lifestyle

A couple days ago I had the chance to catch up with my cousin, of whom I had not gotten the chance to sit down and talk with in years. I enjoyed our time immensely. My cousin is very interested in food health. Somewhere in that conversation Arthur popped up. You can see where I am going with this.

My cousin very much believes I could cure my arthritis by eating a raw diet, with plenty of white foods like garlic to support immune health. And I agree. I might be able to. I genuinely believe that people are able to cure themselves or go into remission through diet. I've seen it happen and it makes sense that if we put good things in our bodies, only good can come. But, of course, it doesn't work for everyone. I've seen it fail numerous times as well. Everyone's body is different, and it will react differently to different things.

Let me say now that I've never really tried diet changes. Do I believe it could work? Yes, I do. I believe it can work for lots of people. But it doesn't mean that's the best or only way to achieve remission.

Our lifestyle is very important to the people we are inside. We must do what is most comfortable and practical to us. I admit it, I am selfish. I really don't want to do a raw diet or anything. I like the food I eat now. My lifestyle probably wouldn't really allow for change, and I don't mind. The Enbrel has been working beautifully (Update- it came early on Saturday, thank goodness) and I don't mind taking it. I have busy days where I barely eat. I have days where I am a guest and I don't have many options for food (which isn't a problem, I'm treated very well). I travel a lot, and when I travel I don't cook or bring more food than is needed for the journey. I like how I live, and since Arthur has been under control, I don't see much need for change. That doesn't mean I'm not open to arthritis friendly recipes, it means I'm not closed to all other food. It's my life after all, and there are no guarantees one path is better than another.

Of course, if you are interested in controlling your health through diet, I encourage you to do so. It has benefit many people and eating right is always good for you. Do your homework and talk to your doctor. Many times you can try these diets whilst still taking your medicines. Be very careful, listen to your body and your doctor. Remember, 'all natural remedies' like herbs are still medicine and ask before you take it. Be careful and take care.

Friday, 5 July 2013

Stress Often, Health Little

I have been worrying too often. I've been breathing too little.

I've been slacking too often. I've been painting too little.

I've been thinking too much. I've been relaxing too little.

I've been tensing too often. I've been stretching too little.

I've been forgetting to eat too often. I've been eating too little.

I've been sleeping too often. I've been well rested too little.

I've been drinking my calories too often. I've drank water too little.

I've been too busy too often. I've smelt the roses too little.

I've been daydreaming too often. I've written too little.

I've been ready to be healthy for so long. I've got little time to waste.

Dear Elizabeth,
 
Take your own advice for once, you hypocrite. Take care of yourself.
Your body needs it.
I need it.
 
-Arthur

Tuesday, 2 July 2013

Driving Arthritis

Maybe it's me. Maybe it's my car. Maybe it's Arthur. But whatever it is, it makes driving an unpleasant experience. I'm betting it's my back though.

Spinal arthritis and sitting up straight with your feet extended and your arms propped up isn't exactly comfortable. Cars are designed to be ergonomical. I propose they design cars for people with arthritis, because the designs at the moment just aren't doing it. People wonder why I like public transport: It's because by the time I'm at my destination, my spine is not typically- for lack of better terms- dying. I mean, if we're talking about a quick drive that's not a problem. But if it's anymore than say a half hour, forty five minutes then we have a problem.

So, what's a girl to do? I don't like taking pain relievers before hand because sometimes they make me dizzy. And there is no way I can possibly walk everywhere. So, if I can't be painfree I thought I might as well be comfortable. Thin pillow for positioning, heat backs and let's not forget clunky walking shoes. Now, if only my car was the kind with the heated seats. Now that's living. Better yet, a chauffeur.