Tuesday, 31 July 2012

Gone Like the Wind

I shall be off on holiday soon, which means I unfortuantely won't be able to post for a bit. While I won't disclose how long I will be gone or to where I am going, I can tell you I will be back shortly.
Until then, please continue to check back. I promise I won't be long. :)

Saturday, 28 July 2012

Leflunomide, Enbrel and Heart

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 incase 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.

Thursday, 26 July 2012

Worry, Worry, Worry

My name is Elizabeth and I am addicted to worrying. I can't not worry about much. I worry about my homework. I worry about accidently hurting someone. I worry about embarassing myself. I worry about money. I worry about not getting into college. I worry my art isn't good enough. I worry that I'm not as healthy as we think and I'm getting sicker. I worry about having to wake up early in the morning and not wanting to eat. I worry when I gain weight. I worry when I lose weight.
It's a miracle my blood pressure isn't so high I should be able to squirt blood out of my finger tips like Spiderman.
Actually it's perfectly healthy.
It's the one thing I don't worry about.

Sunday, 22 July 2012

Leflunomide Update

I would just like to give a bit of an update about Leflunomide, which is like Methotrexate in the fact it surpresses one's immune system.
So far, I'm not doing very well on it. While I don't get nasuea as badly on Leflunomide like I did on Methotrexate, I still do get it. I don't loss hair on this either. However, I've experienced nasty side effects on Leflunomide. I've lost my appetite on this medicine to the point I eat extremely lightly just to get three meals and when I say extremely light, I mean something to drink can become a satisfying meal. I'm also a bit afraid to eat because when I do I tend to get an upset stomach as well. Not all the time, but I do.
Before this drug I was a healthy weight and slim: It was obvious I took very good care of myself. On this drug I've lost a lot of weight and while I still look rather healthy and just as though I've lost a tiny bit of weight, I'm rather concerned. I wasn't even trying to loss weight and actually had no intention of it. Most people don't believe me when I say I have side effects, but rather they think I'm very vain to lose weight that I don't need to lose.
I'm not happy at the moment.

Thursday, 19 July 2012

Second Best Gesture

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.

Sunday, 15 July 2012

Chilled To The Bone

A bit of an update about the  cold water thing. I don't think people understand the severity of it, as demonstrated to me not long ago. A while ago I went into extremely cold water with some friends and they couldn't understand how the water was that bad until I explained it as such:
It felt as though all the muscles and my skin in my feet were ripped apart and bleeding. My ankles felt as if they had just been bent backword. All the bones in my feet and ankles felt chilled and frozen down deep into the marrow, like my bones were replaced with ice completely. My shins were numbed and painful. It felt as though I had fell on my knees and scrapped, bruised and turned in more than usual. I won't go on with more details, but I hope you see how painful it is on top of dealing with the temperature.

Friday, 13 July 2012

We All are Different

Arthritis is different for everyone. Different people respond differently to treatment. Some people can be in the same amount of pain but tolerate it very differently. And no two cases of arthritis are exactly the same.
My arthritis is not the same as another's.
For example, I cannot tolerate bathing or swimming in cold water. It's a proven fact that those with autoimmune arthritis feel cold, heat and pain more than those without it. And I know it's the case with me. While some people may mention that, say, a swimming pool is cold when they dunk their feet in, I feel cold and pain. My muscles tighten and I can feel an ache that goes deep into my muscles, as if my bones were ice.
Like I said, we all react differently.

Wednesday, 11 July 2012

To Trust or Not

I've only ever trusted many people in my life. It sounds odd to say 'I've only ever' at the beginning, but this is how teenagers talk. For example, when you tell them a secret they say "I won't tell anyone" however the next day everyone knows your secret. When you confront your friend they say "I didn't tell anyone except him, him, her, her, him, her, her, her, her, and they might've told their friends."
The vast majority of these people I've had to trust are doctors and nurses.
I've had no choice but to trust doctors and nurses. Not that I trust every one of them: I don't, with good reasons not to (Like the nurse who always gets my weight wrong). But when a doctor finally believes you're sick, you tend to trust this person will help you. Or if you've ever been rushed into hospital and are in so much pain you can't think for yourself, you know the feeling of putting your trust into someone's hands. Even your life.

Thursday, 5 July 2012

15 Things You Can Do To Help Someone With Arthritis

This post is named because it is what people would most likely search on Google.
The other day I was talking with someone very close to me. He mentioned that he felt terrible that he knows I have arthritis and tend to be in pain, but that he can't do anything to make it better. He said he wish he could help me.

I honestly never knew anyone would ever feel that way about Arthur and I, I just assumed no one ever felt bad for me. It came as a huge shock when he told me! I had always hoped someone wanted to help me or try to make things better but I never assumed it was true. A lot of the time I feel like no one cares at all.

Anyway, I came up with several things that truly do help. They're not terribly difficult, nor hard to come by. It's simple things that help and here's my list.

1.) If it's okay to hug the person with arthritis, let them stay as long as they need. That one moment makes a world of difference. To a person with arthritis (or a hidden disability/autoimmune disease) a hug shows you really care. It's easy to forget the person who suffers in silence, and even easier to forget that they're scared or sad or just need to hear "Everything will be okay," or that "It's okay to be afraid." Sometimes a person just needs to feel loved.

2.) Let the person vent to you. Chances are, they just want to talk to someone who won't get annoyed she's talking about it "Yet again." I know, I know, it gets very repetitive and even boring but it helps more than you can understand. Believe me, I know.

3.) Offer to help them out. This could be bringing over dinner or maybe as simple as going upstairs to bring down something the person needs. Especially offer if the person is struggling.

4.) Never, ever dismiss the person with arthritis who suggests a break during shopping, etc. Most of us only ask for a break once we have extreme pain or fatigue. And if we demand a break or just sit down, please just stop and let us rest: Nine out of ten times (at least for me) when I appear upset and just sit or whatever, I am in terrible pain and I'm exhausted. It's like being sick but a hundred times worse that usual.

5.) People with arthritis (and lupus) often feel very cold: Please acknowledge our bodies are sometimes in pain because of the cold. Blankets, jumpers (sweaters), and warm socks are greatly appreciated. Don't force us into a pool, sometimes the water is so cold that it is painful.

6.) It's hard to keep up with the crowd sometimes: Having someone there to walk at a slower pace when everyone else rushes around makes us feel less self-conscious.

7.) Help a person with arthritis open jars and bags. Honestly. Don't announce it to the world, just do this simple but greatly appreciate act quietly.

8.) Sometimes we get flare-ups, so please understand if plans are cancelled last moment. It's not that we are trying to get out of an engagement: We are  sick and cannot move.

9.) We have our limits, try to understand  them. Some of us  can do it all, some of us cannot but most of us are somewhere in the middle. If we're up to try something that seems to push the limits, please encourage us to take it slowly and safely.

10.) If the person with arthritis is a huge advocate of arthritis, show your support! Wear supportive bands, shirts or do anything you can!

11.) Please don't tell us that it could be way worse. Most likely I know this. I'm thankful every day I do not have cancer, diabetes, heart disease or another disease. But it does not mean I am not sick, none the less. Our immune systems don't work properly, our joints are sore, stiff and even deformed, and some of us  take chemo, wear braces and require surgery. Yes, it could be a lot worse but it also could be much better.
12.) Some days we feel like Superman with so much energy, and others we feel the energy has been sucked right out of us and can't do much. Please understands we have our ups and downs.
13.) Unless you really know the person and what hurts, ask before you touch us. Touching can sometimes cause pain, I know this first hand. Be very gentle.
14.) Sometimes asking for help makes us feel weak and vulnerable, please give us respect and treat us with dignity. You would be surprised at the amount of people who help us and treat us like infants.
15.) Don't be afraid to include us in plans! We can do most anything we want, just at a different pace. I've gone to Laser Tag, amusement parks and rollerskating without any problems! Trust me: We don't want to let arthritis make us miss out on anything. Even if we can't go, we still feel loved for being included.

I guess these are simple things to do but they make a world of difference, I swear. No one person does this all for me, but thanks to a small circle of people who truly care, I do feel very loved and supported.
Keep your chin up.

Monday, 2 July 2012

My Project, School Project

I know that lately I have been rather lazy with my posts, and I apologize. I've had so much to do between visitors, projects and just trying to find the time to relax. Anyway, I haven't been very sure of what to post about lately. Thus I've procrastinated. I've been watched medical documentaries from other countries to see how they go about procedures and medical care. I've listened to theme park soundtracks. And I haven't even thought of a subject to write about. How about my project?
While I don't want to be too specific, I will tell you it is something I've wanted to do for quite a while. I've been working on it despite having school assignments to complete. I figured that I could work on them both at the same time but it's not exactly working out that way so what I think I might do is alternate days of which I do the seperate projects.
Anyway one project involves a product with a price and the other involves not getting paid at all. You'd be shocked at which one the school project is.