Saturday, 19 April 2014

My Absence of Sitting

I haven't been very active on the blog lately, even my Twitter and Facebook have suffered. I'm terribly sorry about that: I've been here the whole time, I just haven't been posting. I've even been writing, but I just haven't posted. I've felt immensely guilty about not posting either, but as of recently  I've found myself busy and wrapped up in other things. Like sleeping. Or eating.

The past week I was invited to work on a project that has required me to sit on the floor and paint. I like the painting part but not so much sitting on the floor to do it. I'm very much like a baby because I can't sit up by myself so I've had to hold myself with one arm or sit in a way that kills my legs. I've been coming home very sore. But even through that, I've been taking very long walks afterward. I know how important it is that I keep moving, so after a day of sitting uncomfortably a walk seems as though it would be smart. Unfortunately after I get back home I crash. It's been a miracle that I haven't been falling asleep before five o'clock.

So, please excuse my absence! I can't even promise I'll be back soon- I really need time to recover and even a little time away from the blog.

Sunday, 6 April 2014

Psoriasis is so Easy to Treat

Lately, I've spent a lot of time reading articles online. One of my favourite places is All Women Stalk: I like the beauty and hair advice, and I really like the name. Last night I was on All Women Stalk and one article was very interesting to me: 7 Skin Problems That Are So Easy to Treat. I expected this article would talk about things like dry skin, but I was proved very wrong. One of the problems that are so easy to treat is psoriasis. Psoriasis?! Easy to treat?! Over my dead body it's easy to treat.

The article states that the number six easiest skin problem to treat is psoriasis. This is what the website says:

"You might not realize how common psoriasis is. In fact, it’s one of the most common skin conditions that affect adults. It produces red, scaly, dry patches of skin and can appear most anywhere on the body. There are several types of psoriasis, and some require nothing more than taking a prescription pill. As long as you remember to take it every day, there’s really no simpler way to treat a skin condition."

No, it's not. It's not easy to treat at all. Psoriasis is an autoimmune condition in which T cells cause the skin to become irritated and inflamed and skin cells to go through their cycle that usually takes 30 days in only 3, causing the redness and scales. Yes, it can be controlled with prescription pills- often low dose chemo and other immunosuppressants. It is not the simple matter of a pill though, these medications are very serious and side effects can be unpleasant. Though, other medications can be used: if creams and pills don't work, there are things called biologics you can take. They're injections, often given by the person themselves anywhere from every two weeks to twice a week. In addition to skin psoriasis, one can also get nail psoriasis or psoriatic arthritis, a debilitating, autoimmune arthritis. 

This article infuriates me. Not because of how inaccurate it is. Not because I have psoriatic arthritis and nails. But because my beautiful mum has psoriasis. It covers a good portion of her body, and there are many articles of clothing she will not wear because it would show the affected skin. Do you know how painful it is? I can only imagine what it is for her, because it is so painful to watch. I hate to watch her suffer, often silently. To read an article about how easy it is to clear psoriasis is so upsetting. If it's so easy, why is my mum still suffering? 

Let's not take this. These conditions, especially autoimmune, are not easy to treat as many insist they are. This is just one example of a society that calls autoimmune arthritis, lupus, fibromyalgia, irritable bowel disease, Lyme disease and hundreds of other diseases easy to treat, or even fake. Please, let's tell All Women Stalk how horrible this article is. I've listed many ways to get in touch with them, if you would please help. If you cannot do that, please share this article. There are many people with psoriaisis. Let's give this often silent disease a voice.

The All Women Stalk Twitter: @AllWomenStalk

The All Women Stalk Facebook:

Don't ignore this issue. Please share.

Thursday, 3 April 2014

Shoe Rules for Happy Feet

I love shoes. Shoes can really dress up or down and outfit, just the way you want! Having arthritis, or just chronic pain, can make finding good shoes really difficult. It's taken years, but I've finally found ways of coping. Years of wearing ugly, clunky shoes that are so comfortable or pretty shoes that hurt like no tomorrow have gave way to finding great shoes. It just takes a little effort, but here are my shoe rules.

1. If you are able to, invest in your work and dress shoes. This is most important for women, as the two types of shoes can often be one of the same. Heels may not be possible for everyone, but some women actually can: They just need a very thick, small heel and a well made shoe. Consider saving for a quality pair of shoes that will last, give your feet support and most importantly give you confidence.

2. Get proper shoe equipment. Get arches if your doctor recommends them, especially if your feet are flat. You don't need to spend a fortune on getting them custom made: I've found them in regular stores and some are just as good as the custom made ones. In fact, my doctor thought mine were custom made! In reality, I bought them for nearly nothing.

3. If your heels ache, get heel cups. They're a bit like little trampolines for your feet. I highly recommend them- my heels ache a great deal, and throb when I wake up. But lately with my heel cups, they've been much better. They too can be found cheaply, in fact you probably could find directions on how to make your own.

4. Almost Any shoe can be made comfy if you have the right equipment. I can wear ballet flats by putting arch supports and heel cups in them. It may be difficult in some shoes, but I've found sticking down arches and cups with double sided tape helps a tremendous amount. You can also stick cushions inside too.

5. If you have nice shoes that has no supports or way of keeping supports in them, try to plan when you want to wear them. Try and make it on a good day, but I know that's not predictable. Make sure you take your pain medicines, and if you have a lot of walking to do (like if you take the train), bring a spare pair to change into. Having a spare (preferably light pair) will also be good incase you flare during the day and need comfy shoes.

6. Arches hurt to break in, but you don't have to completely suffer. Stick small pads on them, it makes it a little more bare able! Don't try and wear them the entire day at first: try for two hours a day, and try longer as it goes by. My arches hurt so much for the first week, but it was well worth it: any shoe I put on with my arches are like slippers.

7. Break in shoes quicker! Dip them in water, put on a pair or two of thick socks and then the wet shoes. Use a hair dryer to dry your shoes as you wear them!

Monday, 31 March 2014

The Progressive Secret

I have a secret. It's a secret because I'm afraid to tell people: I'm afraid they'll react by telling me I'm very dramatic. I'm afraid they'll dismiss me, or worse, get mad at me. I'm even a little afraid of scaring a few people by telling them. But I'm so tired of keeping this secret in: I want to stop protecting others and finally tell the world something that's bothered me for a very long time:

I feel like a ticking time bomb.

There. I finally said it. I feel like a time bomb. I don't want to defend why I feel this way either, but I know few would understand otherwise.

Autoimmune arthritis tends to be progressive. It's an unfortunate fact that rheumatologists often don't tell their patients, so some people figure it out after a few years if they never responded in an ideal way to treatment. Some people are lucky and find treatments that work perfectly for them, and that's amazing. But others are not. Arthritis can progress. My arthritis has progressed. And I'm so scared.

Lots of other people are too, but they don't want to talk about it. A lot of times, they're silenced by people who claim they should not be so selfish. 'It's not cancer.' 'It's not heart disease.' 'You're not dying.' But you have every right to talk about it! This is your life and you have every right to be scared. You have every right to be mad. You have every right to talk about it and don't let anyone convince you otherwise! Tell them to walk in your shoes. Let them imagine being exhausted after waking up and not being able to move. Let them try to comprehend the pain we endure trying to live like nothing is wrong. And then let them imagine the idea it might get worse- I'm sure if the tables were turned they would want to talk about it too, and even cry.

"Just because you can't understand something doesn't make it wrong," -Sword in the Stone.

It's not selfish to worry about your life. In fact, it's foolish not to worry if something may affect your quality of life. You're the only you that you have. You're a treasure to be admired, not a bottle: You shouldn't hold things inside of yourself. A bottle with break when it holds too much inside of it. Sometimes, it even explodes. Take care of you. You have that right. Your concerns, thoughts and emotions are valid and don't let anyone make you feel inferior because you're not "bad enough" or "good enough," whatever that means.

Wednesday, 26 March 2014

Fight for Your Life

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 not a clear cut diagnosis or the worst disease or damage they've ever seen, but it is for that person. And doctors don't get that.

We are often called pushy patients- even seen as drug addicts because we have to push to get adequate pain management. But do they realise what would happen if we didn't push? We wouldn't be helped. We would often suffer. They don't understand that often we've been pushed away, so we learn to fight. And not just for some pills or time. We fight for our lives.

You are an individual with the right to proper medical treatment. It might not be easy, but make sure you get proper care. Push for it. Insist on it. Do what you need to. No one has the right to make you suffer through something that can be helped. Fight for your rights. Fight for your life.

Monday, 24 March 2014

Blue Fingers from Standing

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 mild circulation problem- I swear sometimes I don't know why I bother with a doctor: My knowledge and Google are much better and less of a hassle.

I don't know what it's like to be an actual doctor, I just imagine I'm one when I watch House or Doc Martin. I know doctors deal with loads of paperwork and whatnot, but still... It's a bit silly to give your patient a half thought of diagnosis just to explain something. I can see the little man behind the curtain- Doctors aren't superior beings. They're humans who don't contain the answers for everything. If they don't know something, I think it's better when they admit it rather than giving a stupid diagnosis or claiming nothing is wrong at all.

I'm not asking for cures. I'm not asking for a life changing diagnosis- anything but another one of those. I'm not even asking to know why everything happens. All I ask is honesty. It's okay with me that you can't cure me. It's okay that you don't know how I got to this point in my health. It's even okay that you don't have a name for something going on. Just understand and believe me. Let me be able to trust you. Try to help me in anyway you can.

Just don't brush me off.

Wednesday, 19 March 2014

Adults Treat Me Different

I find it funny how adults preach to children that they should treat those with disabilities no differently from others, however adults tend to do the opposite. When I tell my peers about being chronically ill, I don't usually get treated differently after. It does happen, and sometimes it's with extra consideration. It's really nice. Adults, on the other hand, usually treat me differently from others. Occasionally it's just to make sure I'm doing okay, which is always appreciated. Other times it's as if they don't believe me. But more often than not, it's just different from other kids. Adults are often surprised I lead a more normal life than they expect. I would like to set the record straight:

People with chronic illnesses are normal people. 

I'm not a hypochondriac. I'm not a saint. I'm not looking for attention. I'm a teenager with a chronic illness. I'm a girl who loves her friends. I think homework is the bane of existence. There's a boy I can't get off my mind. I love getting dressed up. Food is my first love. My room is covered in posters and magazine clippings and is filled with music. I have stuffed animals all over my bed. Sleep is my favourite hobby. I watch romantic comedies and wish for a Joseph Gordon Levitt for myself. I pride myself on seeing all the latest Disney movies. And if I didn't have to grow up, I don't think I would.

I'm only a kid. I might have an 'adult' illness, but that doesn't make me any older.