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.

Saturday, 15 March 2014

Things I Wish They Told Me

I was about eleven when I began being treated for juvenile arthritis. As clever as I was at eleven, I didn't understand everything. Sometimes I wish doctors would sit there and tell you more, or at least give you a little pamphlet called "All the Things I Don't Explain." Even if I was beginning treatment and diagnosis now, I wouldn't have known these things. And I admit I'm still learning.

1. We're Not Treating Symptoms. We're Treating a Disease.

Treating the symptoms doesn't treat the disease, but treating the disease does treat symptoms. It may not mean your symptoms are relieved for a long time, but it could mean that damage is prevented. For example, if your doctor says it could take six months for a medicine to take full effect it means that you're body will be completely using the drug against the disease. It doesn't mean your symptoms will completely disappear by that point. I really wish they explained that.

2. This disease is progressive.

They didn't mention that. But it was probably for the better. Until it progressed.

3. You are going to grieve.

It's a very common thing to go through after diagnosis. The five stages of grief apply to dealing with diagnosis of a chronic illness. You may not go through all of them, and some people never get past some stages like anger or denial. But you have a good chance of finding yourself grieving. And that's perfectly fine.

4. Arthritis may affect you in ways you didn't expect it to.

Lots of people, even those who have it, don't realise how arthritis can affect more than just joints. I didn't know in the beginning that my fatigue was part of it, or that I would get kidney problems from the inflammation. Not that people newly diagnosed should expect to be affected in such ways, but it's good to know what to watch out for.

5. It's okay that it changed your life.

You might not like the way it changed things, but it's okay That it did change. A chronic illness is going to change things, even if you don't think it should or want it to. And don't let anyone convince you that you should let arthritis change your life, since it's "just arthritis." It's not just arthritis.

Wednesday, 12 March 2014

Disgusting Patient Care

 I go to school with a wide variety of characters. And no, it's not because they're art students. Actually, at least half time time I go to classes with -gasp- other people. Oh the horror! Yes, there are kids studying for every type of profession. I've noticed the most popular is nursing. In fact, I would bet money on saying that for every ten students I've met, at least two are going to be nurses. Nursing has been a very popular career choice for a long time, and many think it's a stable, rewarding job. And I agree with that: Sometimes I wish I had what it takes to nurse. But I know I couldn't, so I moved on. I just wish others would too.

The other day I sat in class, quietly reviewing for an exam when I heard person loudly talking about their job. I found this person is studying to be a nurse, and is working as a nursing assistant in a dementia and Alzheimer's ward. What I also found was that I'm horrified of what's happening there. This person described locking herself and the patients in a small sitting room for hours on end. Then they turn on the television and wait for their shift to be  done. They talked of being annoyed and getting a headache from an elderly lady who would not stop crying, not wanting to be locked up. They laughed as they talked of an elderly gentleman who is only able to say a few words. They talked  of leaving a patient asleep in a completely inappropriate area, where they could get hurt. This person talked of their patients like they were worthless things, not people in need of care. Someone suggested they bring a book to read to the patients, and the person dismissed it saying "I don't care enough to."

I wish I could tell you this is a horrible joke, but I can't.

I could go on about the disrespect of patients and the lack of care, but their words speak loud enough. I could ask "what if they were their grandparents?" But I'm not. I will say I cried thinking that's what a loved family member of mine could be enduring in her care, but thankfully I know she's not. And I will say we need to stop hurting people. Not patients: People.

PS. I swear I'm not a troll. This is an actual person talking about their actual nursing job.

Monday, 10 March 2014

Blue Nails

If you know me, you know that I'm always cold. I've always wondered if this was the arthritis or if it  means I have a cold heart. Regardless, you tend to see me bundled up at all times. Sometimes I won't even take my coat off when I get  home at night. The cold instantly makes my body stiffer and more painful: if I'm out shopping, I'll just walking around looking so I don't have to move too much. And let's not even  go into how cold my hands are at all times (eve in the summer). But recently, I've had the oddest thing happen to me: My fingernails are going blue.

The first time this happened I text my mum a picture. She instantly became frightened and called my rheumatologist. He wasn't in, but the nurse wrote it down in my charts. I see him next week anyway.  I've been taking pictures of it to show my doctor as well.

Everyone in my family who has been told is obviously a little startled and then goes on to suggest it's just the cold. Obviously: When you have arthritis, any little thing that bothers you is "because of the cold." But they care. Except for the one who shrugged saying his fingers get cold too.

Being the professional sick person I am, the first thing that popped into my head is Raynaud's. But this would probably be the slightest case of it ever seen. But it's the only (not scary) theory I have at the moment. Isn't it weird how with autoimmune anything, the minute you get in a comfortable spot something else pops up? Just like, "hey, that flare is over? Great, but let's spice it up!"

Oh well. It could be much worse! I'm just going to be sitting on my hands, carrying hand Warmers and wearing fingerless gloves more often. What fun!

Friday, 7 March 2014

Arthritis Life Q&A

Hi guys! Lately I've gotten a lot of questions about having arthritis and I thought I would share them with you. Enjoy!

"What did you do to get arthritis?"

What did you do to get brown eyes or red hair? You got a specific set of genes. Science seems to point that autoimmune arthritis and other diseases are hereditary and passed on through genes and come out due to triggers like being ill or an injury.

"Why can't you just get a hip replacement?"

I don't need one! Yet. My joints are damaged, but the damage isn't what causes all the pain: it's the inflammation caused by my immune system. Getting steal hips and knees won't stop the pain.

"Did you know apples are good for the immune system?"

Next question.

"Why are you so tired all the time?"

Alas, it's a symptom of autoimmune arthritis. Not only doesn't hurt to move, I'm too tired to move anyway!

"I heard arthritis can be caused by not flossing enough. Do you floss?"

Stop.

"How do you continue on with all that pain?"

Let's be honest: Do I have much of a choice in that? I guess I do. It's for the reasons anyone else goes on: I've got a dream and I'm following it.

"Have you ever lost friends due to having arthritis?"

Yes. The last time was a year ago, thankfully. Sometimes people can't handle chronic illness, even if they're not the one who has it. Oh well, someone who leaves you because you're dealing with something isn't worth your time or sadness.

 "Did you know cherry juice helps-"

We're not doing this today.

"What's brain fog?"

... I'm sorry, can you repeat the question? I forgot.

""Why do you takes uh dangerous medicines when ibuprofen is so much safer?"

That doesn't prevent horrible damage for. Being done to my body. You may not understand- and that's okay until you see what a person goes through with flaring arthritis-  but it's very worth it. For some, it's either taking a medicine or not having a quality of life.

"Have you tried diets?"

Somewhat. I have a lifestyle where it's hard to follow very strict diets, like gluten free or something. But I'm happy how I live now-  I eat healthy enough, walk for exercise and my medicines help a lot.

Tuesday, 4 March 2014

Heel Cups

Heel pain is very common with psoriatic arthritis. I'm not am exception to that. Some mornings I wake up feeling as if I slammed my heels into the pavement for six hours straight. In fact, sometimes I imagine that cutting off my heel would feel better that living with it. Walking isn't always pleasent either: It can feel like walking on spikes. Recently my rheumatologist gave me a miracle:

Heel Cups.

They're just like they sound: Little foam wedges that cup and cushion your heels. They're like shock absorbers for your feet. And gosh, it's like a piece of heaven in your shoes. I've worn them in two pairs of shoes and so far they've fit both well. That's surprising considering I already have enough 'equipment' in my shoes as it.

Anyhow, heel pain or not I highly recommend looking into getting a pair. They do absorb the impact of walking (or rather, limping) and make it easier on your feet and other joints. Look for foam ones that are thick: They offer the most support and comfort, compared to gel ones that can squish and make your feet slide around. Anything for happy feet, of course!