True friends

Recently I was asked to write and article for my school newspaper about life with arthritis. I politely declined, not because I don't want people to know that I have arthritis, but because I know my "friends" would have smart comments.  This is why I rarely talk to people about my disease, because they don't understand. To them I'm making up my pain.  Just because they can't see it, they think I must be lying about it. I only really talk to two of my friends about my arthritis because I know they'll understand. My one friend, Brooke, also has a chronic illness so it's easy to be able to relate to her. She knows I'm not lying about my pain to get attention and she understands the frustrations of people who don't believe you. I don't know what I would do without her to talk to. I think it's really important to have at least one person that you can really open up to, and for me she's that person. 

Laughter is the best medicine

Everyone knows the saying "laughter is the best medicine" and I personally live by this motto. Any time I'm feeling down because of all the pain I'm in having a good laugh can always cheer me up. Below are some of my favorite funny pictures. 

Who doesn't?

My best friend is a ginger and this is seriously the funniest thing ever!

Prom :)

Here are some pictures of prom that I promised I would put up :)

Tattoos

Lately I have really been wanting a tattoo but with an autoimmune disease such as JIA it's probably not the best idea. I asked my rheumatologist if it would be an issue with the medicines I'm currently on and she said she wouldn't advise getting one, although I doubt that will stop me from getting one.

This is what I would like my first tattoo to be of. The reason I want this tattoo is that my arthritis originated in my right wrist which is where I would get the tattoo. Also some days I feel like curling up in a ball because I'm in so much pain but this would remind me to live life to the fullest.

Rain, rain go away...

Anyone with arthritis can tell you that rain makes their joints go crazy. I don't even need to look at the weather channel to know if it's going to rain on not, my joints will do that for me. Where I live it has been raining non-stop for like the past week! Needless to say that doesn't help the flare I'm currently in. I just wish it would stop raining, I mean isn't the saying April showers bring May flowers...?

Inspiration

When you're having a flare sometimes you just need some inspirational quotes. I'm going to share with you some of my favorites.

Prom

Prom is tomorrow! I'm seriously so excited, words can't even describe how excited I am. Lately I've been so busy with prom preparations I haven't been able to update as much as I would like to. Last night I spent three hours at the nail salon getting my nails all fancy for prom! I'll post pictures of prom Sunday for everyone to see :)

My thoughts on Enbrel

In my last post I discussed how  Enbrel is used  to treat JIA and other inflammatory conditions. In this post I'm going to express how I feel about taking Enbrel for the first time.

When I first got the news that I had to start taking Enbrel, I kind of freaked out because it is administered through a shot. Dr. O told me there were several types of the shot and asked me which one I would like to try. I decided on the Enbrel SureClick auto injector which looks kind of like an epi-pen. To me this sounded like the most fool-proof method, and I won't even have to see the needle! Click here to watch a demo on how to use the Enbrel SureClick auto injector. After watching the demo I felt slightly more comfortable with injecting myself.

My doctor told me that the first time I have to give myself the injection, Enbrel will send a nurse to my house to make sure I'm doing it correctly.  This will give me some peace of mind. Although I'm still waiting for the paper work to go through for my insurance to approve that I can take Enbrel, I can't help but think about how scary it's going to be the first time.

So, what exactly is Enbrel?

Yesterday I went to see my rheumatoligist, Dr.O for a check up. Last time I saw Dr. O, I didn't get good news and this time wasn't any different. She said there was still inflammation in my right wrist and ankle which is not a good sign. After discussing several treatment options Dr. O, my mom, and I decided on Enbrel.

Enbrel is an anti-tumor necrosis factor drug or anti-TNF for short. TNF is a substance that your body naturally produces. For people without an inflammatory condition excess TNF is blocked naturally but, for patients with an inflammatory condition such as JIA  excess TNF can lead to more inflammation or even joint damage. Enbrel, or any anti-TNF drug, will reduce the ammount of TNF the body produces.

What not to say to someone with JIA

What not to say to someone with JIA

• Those drugs are too dangerous

Yes, I know the drugs are dangerous but not as dangerous as what will happen to my joints if I don't take them.

• My grandmother has that

Your grandmother probably has Osteoarthritis which I talked about in an earlier post and it is completely different from JIA.

• You need to exercise more

If I can hardly walk up the stairs, how the heck do you expect me to exercise?!

• Aren't you feeling better yet?

JIA is a chronic disease, meaning it will never really go away.

• But you look fine

I've talked about this in a number of previous posts so there's no need to elaborate.

• You take too much medicine

The medicine is obviously prescribed by my doctor for a reason. Do you think I enjoy taking 5 pills a day?

• It's all in your head

Tell that to the MRI's that show joint damage and inflammation.

• You're too young to have arthritis

I have it, so I'm obviously not too young.

Types of arthritis

I know on this blog I talk mostly about JIA and my journey with it but there are many forms of arthritis, infact, there are over 100 different types of arthritis! Arthritis is a general term used to describe joint inflammation. Rheumatoid, Osteoarthritis, Gout, Lyme's Disease, Lupus, and Psoriatic Arthritis are just a few. Osteoarthrhtis and rheumatoid arthritis are the two most common types of arthritis.

The most common type of arthritis is Osteoarthritis which is due to the wear and tear of joints and most commonly happens with age. When people hear the word "arthritis" they are typically thinking of Osteoarthritis. This type of arthritis is most commonly found in people over the age of 65.

Rheumatoid arthritis (RA) is an autoimmune disease just like JIA. In fact, JIA used to be called juvenile rheumatoid arthrhtis (JRA). The reason they changed the name of JRA to JIA is because JRA sounds like a minature form of RA when infact it is much more complicated than RA. The word idiopathic means of unknown origin and was chosen because no one knows what exactly causes JIA.

Wake up, survive, back to sleep

The past couple days have been hell. When I wake up in the morning, I feel like I've been hit by a truck. Every joint in my body aches and nothing I do can make it go away. I'm having a flare, and a bad one. I actually had to leave school early yesterday because I was in so much pain. Upon arriving at my house, I took a pain killer and immediately fell asleep. One of the side effects of JIA is fatigue, and lately I just can't seem to get enough sleep. When I finally fall asleep I have trouble staying asleep because every time shift positions pain wakes me up.

It's crazy because I've been doing so well arthritis-wise the past year or so. Due to the fact that I was feeling so pain-free this flare is hitting me like a ton or bricks. It's hard to go from hardly any pain at all to excruciating pain.

What does arthritis look like?

After reading my blog I'm sure you all know by now that people of all ages are affected by arthritis. But some of you may be wondering what exactly arthritis looks like. Arthritis is known as an invisible illness which means you can't tell that someone has it just by looking at them. This is true for most people, but for some the joints can become incredibly swollen and disfigured, especially during a flare.

Above are pictures of joints disfigured from arthritis. These are not my pictures, they were taken from google.com.

Just like having blonde hair

The other day a group of my friends were at the one guy's camp helping him get fire wood for a party he's having this coming weekend. I told them I couldn't help load the wood onto his truck because I was having a flare and my wrists were in a lot of pain. One of my friends, actually I consider her one of my best friends, made the comment that "having arthritis was like having blonde hair because neither of them really affect your capability". I was so angry and hurt by this comment I just stood there silent. I can't believe that this is what people really think of this horrible disease. Just because I don't look sick, doesn't mean that I'm not in pain. 

People wonder why I never talk about my arthritis and this is exactly the reason that I don't. They don't understand because I don't appear to be physically ill so my pain must not be real. Just because you can't see something doesn't mean that it doesn't exist. 

One long day

As you all know I had my jaw injected yesterday. I've decided to approach this post a little differently and I hope you all like it. 

Let me walk you through my day yesterday...

5:00 a.m. - Woke up (I always thought 5 a.m. was a myth...)

5:30 a.m. - On the road to Hershey (There was soo much traffic.. who would have thought?) 

7:00 a.m. - Arrived at the hospital (It took my mom and me about 20 mins. to find a parking spot)

7:30 a.m. - Arrived at the Same Day Unit.  This is where I changed into a hospital gown, peed in a cup, and had stuff about me entered into a computer.

8:00 a.m. to 8:20 a.m. - Anesthesia (it took them five needle sticks until they could start my IV. I have incredibly small veins)

8:30 a.m. - Procedure (the doctor used a CT machine to guide where the needle needed to be placed to inject me)

9:00 a.m. - Recovery room (I was fast asleep, but I had my mom write down the times so I could make this blog post.  Apparently I swear like a sailor when I wake up from anesthesia.)

10:00 a.m. - Woke up and the nurse gave me a percocet (I was, and still am, in an incredible amount of pain so they gave me a pain killer).  Then I went back to sleep.

1:00 p.m. - Threw up (Oh the lovely side effects of anesthesia). 

1:30 p.m. - Finally got to go home (What an incredibly long and exhausting day for both my mom and me)
3:30 p.m. - Arrived home, ate some mac and cheese and slept. 

Third time's a charm

Tomorrow I'm going to get my jaw injected with steroids for the third time. I've talked about the steroid injections in previous posts, but I'll do a little recap to refresh your memory. 

I'm scheduled to have my jaw injected at 7:00 a.m. in Hershey.   This means my mom and I will have to wake up around 4:30 a.m. because we live a hour and a half away from the hospital. Once we get there and I get all situated I'll be put under anesthesia so they can inject the joint. The actual procedure typically doesn't take long, or so I'm told, but it takes me forever to wake up from the anesthesia. Once I finally wake up, I typically get nauseous from the anesthesia.  This means I get to stay at the hospital for several more hours. When I finally get to go home, I'm normally in so much pain that I take pain killer and fall asleep.  Then I wake up to be in more pain. In the past when I had the injection, I had to miss about a week of school because of the extreme pain and swelling. 


I'll try to post tomorrow after I get home, but if I'm not able to I'll post Wednesday to let you all know how it went. 

Happy Easter!!

Since it's Easter break I've decided to take a break from talking about arthritis and share some cute Easter pictures. Enjoy, and happy Easter everyone! 

Kids get arthritis too

A lot of times children with chronic illnesses feel alone, like there is no one else out there who knows what they're going through. When I was first diagnosed, I felt the same way.  Then I found this website where other children with JA share their stories, and you can even share yours. They have three catagories they seperate the stories into.  They are kids, tweens, and teens. This makes it easy for children of any age to find someone that they can relate to. If you want to visit this site just click here.

Flare (verb) - a sudden recurrence or worsening of symptoms

When I woke up this morning, my joints felt stiffer than usual.  It seemed to take longer for my ankles and wrists to loosen up.  This morning stiffness and fatigue lasted all day.  I’m having what is known as a “flare”.  Flares can last days, weeks, or even months!   I talked to my doctor and she wants me to continue on the same meds for another 3 weeks before she will think about switching me.  So I guess that I’ll just have to keep my fingers crossed hoping that the medicines start helping and deal with the pain until then.  She did call in a prescription for a medicated patch . .. . but that would cost over $250 for one month even though we have health insurance and a prescription plan!!  So not only is my JIA hurting me physically and emotionally, it is also hurting us financially.   

Change of Plans

When you have a chronic illness like arthritis, some days are better than others. Last week was a pretty good week. I woke up in the morning and  felt well rested and alert . . . . well as alert as one could possibly be at 6:00 a.m.  I walked up and down the stairs at school a billion times.  I worked on my Junior paper.  Things seemed pretty normal.


So my Aunt calls Friday night and wants to take me shopping in Harrisburg on Saturday.  I'm like, of course, it's time to get new spring clothes!


When I hop out of bed Saturday morning, I yell out in pain.  My "driving" ankle was killing me.  I had to  basically limp to the bathroom which is less than 20 feet from my bedroom.  I try walking downstairs, and it's more like a hobble.  My Aunt was supposed to pick me up in an hour.  As much as I wanted to go, I knew that I wouldn't be able to walk around the mall for hours with the way my ankle felt.  


So JIA changed my plans.  Instead of shopping, I spent the morning on the couch watching Jersey Shore.

Something else to worry about

In February 2012, the professional journal Arthritis & Rheumatism reported that the cancer rate among children with juvenile idiopathic arthritis (JIA) is four times higher than in those without the disease.  The study authors clearly state that this increase does not appear to be associated with medications including the use of tumor necrosis factor (TNF) inhibitors (biologics). 

http://abcnews.go.com/Health/juvenile-idiopathic-arthritis-linked-elevated-cancer-risk-study/story?id=15559238

It's all about immunity

Upon waking up this morning I discovered that I'm getting a cold sore, great. For most people this isn't a big deal.  I mean they're a nuisance, but they typically go away within a week. Because JIA is an autoimmune disease (which means my white blood cells which are used to fight off infections actually begin attacking each other) it makes me and everyone else who has JIA more susceptible to illness. So when I get a cold sore, my entire bottom lip swells up like a balloon and I get really sick.

On top of JIA being an autoimmune disease, some of the medication used for treatment are immunosuppresents which weaken the immune system.   Due to my weakened immune system, I really have to be careful when I get sick because what might just be the common cold to you could become potentially life threatening for me.

Let's move together

Another way the Arthritis Foundation raises money is through arthritis walks which take place all over the United States. You may be thinking what exactly is an "arthritis walk" well let me tell you. The Arthritis Walk is the the Arthritis Foundation's nationwide team walk  that raises funds to fight arthritis. The event generally takes place during the month of May in conjunction with National Arthritis Month. Click here to find an arthritis walk near you.

Random thoughts

Take Action. Make a Difference. Fight Arthritis.

It doesn’t matter how you say it: Washington needs to hear that ignoring arthritis is unacceptable.

The annual Advocacy Summit brings together advocates, young and old, from across the country to meet with their Members of Congress. Join us in Washington, D.C. in April to:

•Learn firsthand about our priority advocacy issues.

•Meet face-to-face with your Members of Congress and educate them about arthritis and its devastating effects on the 50 million adults and 300,000 kids with the disease, their families, and our country's economy.

•Let Congress know more needs to be done for people with arthritis.

 In 2008 I was fortunate enough to attend the Advocacy Summit in Washington, DC.  I was able to share my story with Senator Robert Casey and Representative Jason Altmire.    The other advocates and I were living proof that kids get arthritis.  We asked that congress allocate more money towards juvenile arthritis research.  It was an awesome opportunity for me and one of the positive things about having JIA.

A picture is worth a thousand words

My wrist is really bothering me today, so instead of typing a lot I'm going to share some arthritis related pictures. Hope you enjoy :)

Can JA make the cut?

You might think that JA is uncommon when in reality it is the fourth most commonly acquired childhood disease following only diabetes, epilepsy, and cancer. So if JA is this common, why do so few people know about it? This is a question that I've been asking myself for quite a while. I think part of the reason is money . . . or lack there of. 


The Arthritis Foundation gets very little funding  and support from our law makers.   President Obama speaks publicly about the increasing burden of chronic diseases like heart disease, diabetes and cancer, but he never mentions arthritis.  Congress is faced with making cuts in federal funding, and arthritis research is on the chopping block.

The Arthritis Foundation tries to raise money by sponsoring arthritis walks, the Jingle Bell Run, and other fundraisers.  They even sponsor an  Advocay Summit in Washington D.C. (which I'll talk about in a future post).

What can you do to help?  The Arthritis Foundation makes is very easy to email a form letter to Congress and President Obama asking them not to cut funding.   If you want to become an Advocate, it is as easy as clicking the links below.

• http://www.arthritis.org/priorities-research.php

• http://www.arthritis.org/ask/

Ignoring juvenile arthritis is unacceptable.  Let's be sure the President and Members of Congress hear our voice!

Arthritis on the web

If you want to find more information on JA,  there's a great website that I use for some of the information I put in my blog. Just click right here and it will take you to the website. In addition to JA the site also talks about other forms of arthritis.

WARNING

In a few weeks I'll be getting yet another steroid injection in my jaw (this will be my third). Typically following the injection I have to miss anywhere for 3 to 5 days of school due to the swelling and extreme pain. When I tell my friends I won't be in school that week they usually make comments like "Oh you're so lucky! I wish I had arthritis!" or "You always miss school because of that it must be nice". When people say things like this I want to throw something at them. They don't understand that just because I don't "look sick" doesn't mean that I'm not in pain.

24/7/365: It never ends

Can you remember a time that you were injured?  Maybe you twisted your ankle, pulled a muscle, or  sprained your wrist.  Do you remember how that felt  . . .   the pain, the difficulty just doing a normal daily task, how you couldn't sleep at night because it hurt so much?

Now imagine having that kind of pain 24 hours a day, 7 days a week, 365 days a year and you might begin to understand how someone with JIA feels.   It's hard enough to get through a rough period; it's even harder to have to do so on a daily basis.

For the ordinary arthritis-free person getting ready in the morning is no big deal. They brush their teeth, do their hair, and get dressed without a problem. For me even something as simple as yawning causes my jaw excruciating pain. When I wake up I decide how I do my hair on how my wrists are feeling that day not on what outfit I'm wearing. For example if I'm feeling stiff in the morning that means straightening my hair that day is out of the question because it hurts.

What about driving? Most people do this without a second thought. I can't drive for long periods of time because my right ankle or "driving ankle" hurts when I do.

Wing Night . . . .I decide if I will go out with my friends depending on the amount of jaw pain I have that day.  More often than not, when I do go to wing night, my jaw will be killing me by the time I get back home.  Good times, huh?

But I just take it one day at a time, sometimes one hour at a time, and try not to let arthritis rule every aspect of my life.

Uveitis - Something to keep an eye on

Uveitis is a serious condition in which the middle layer of the eye becomes inflamed.

Although I personally do not have uveitis many children with JIA do.  In fact about 1 in 8 children who are diagnosed with JIA develop uveitis. This is an invisible disease much like arthritis.  It shows no symptoms in its early stages when it's most easily treated. If you are diagnosed with JIA, your doctor will more than likely have you get frequent eye exams (about every three months) to check for inflammation before it becomes too late. 45% of children who have uveitis become blind. Girls who are diagnosed with JIA by the age of one are most likely to develop this condition although people of any age or gender could develop it.

Not only do the children who suffer from this condition have to deal with the chronic pain of arthritis, but they also have to deal with the fact that almost half of them will become blind. These children are incredibly brave, and I have so much sympathy for them.  I know how hard it is to have arthritis alone.   I couldn't possibly imagine also being blind because of the disease that I was dealt.

Methotrexate

Many children who have JA are put on methotrexate. Methotrexate is a DMARD which stands for a disease modifying anti-rheumatic drug. This drug takes quite a while to kick in, it can take up to twelve weeks for patients to feel any relief. Methotrexate is typically prescribed with a NSAID which is a non-steroidal anti-inflammatory drug to reduce swelling in joints and alleviate pain. While taking this drug you need to frequently get blood work to monitor for potentially dangerous side effects such as liver problems and low blood cell counts or even lung problems. While taking this drug you must take folic acid because methotrexate interferes with your body's ability to use folate. One lovely side effect of this drug is that it makes you nauseous, just peachy huh? While taking methotrexate alcohol is absolutely off limits because the drug may already cause liver damage so drinking increases the risk of damage to the liver.

Other than all of the fabulous things listed above about this medication is also used as a chemotherapy to treat cancer patients.