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.

Only old people get arthritis right?

This is a video from the 2011 Juvenile Arthritis Conference. I did not make this video it was taken from youtube.com. I am not in this video but I've been to the conference before and I feel that this is a real eye opener for people who think "only old people get arthritis."

Flying Monkeys, Cowardly Lion, and Toto

Flying Monkeys - - Remember the nasty, little army of monkeys that the Wicked Witch used to protect her?   Well, I have a nasty, little army of medicine that will protect my joints.  The one drug is Methotrexate.  The drug info sheet that came with it said, “This is a potent medication. It should only be used to treat cancer and other serious conditions.”

When you have a chronic disease like JIA, it just becomes a part of your life. The reality, though, is that JIA is a serious condition.  Any autoimmune disorder can mess up your body and can take a toll on many aspects of your life. But seeing JIA associated with cancer scared the crap out of me.  I guess you don’t realize the severity of what you’re going through when it is your version of “normal” and your own reality.   

Cowardly Lion - - "Put 'em up, put 'em up! Which one of you first? I'll fight you both together if you want. I'll fight you with one paw tied behind my back. I'll fight you standing on one foot. I'll fight you with my eyes closed... ohh, pullin' an axe on me, eh? Sneaking up on me, eh? Why, I'll... Ruff! "  

Like the Cowardly Lion I put up a good front.  I act like I am not in pain.  I act like I can do everything my friends can do.  I act like getting MRI's, blood work, jaw injections, and taking medicine doesn't bother me.  But the truth is, sometimes I want to ask the Wizard to give me Courage. 

Toto - - Ok, so his name is not Toto.  His name is Dooney N. Burke.  When I'm hurting and tired, I want to pick him up in my arms, click my heels three times, and say there's no place like home.

 

Off to see the wizard

By the title you probably thought this post was going to be about The Wizard of Oz,  but I was referring to my rheumatologist (Dr. O) as the wizard because of all the wonderful things she does to help with my pain and such. This past Tuesday I had an appointment with Dr. O, just a regular check up.

First I should give you a little background about my arthritis... When I was first diagnosed I had lumps on both of my wrists, and I was misdiagnosed by three other doctors claiming it was just a cyst or carpal tunnel syndrome.  They said it would go away in time, but the pain and the swelling just increased.  Then I went to the "great and powerful Oz" - -  Dr. O who took one look my wrists and said that I had arthritis.   She started me on medicine and after some time my arthritis went into remission. 

About 2 years ago the joints in my jaw (TMJ) got inflamed and damaged from the arthritis.   My other joints seemed to still be fine.  Then the other week when I was driving,  I noticed my right ankle or "driving ankle" was really sore and stiff after driving.  I also noticed that my right wrist was really hurting when I wrote in my classes and straightened my hair. So at my appointment on Tuesday I asked Dr. O about it.  She checked it out and sure enough both my right wrist and ankle have inflammation!

This really bummed me out, because now I was having what is called a "flare".  That when the arthritis is active and causes pain, swelling, and stiffness.  So now instead of taking one pill a day, I have to take two pills every day and once a week I take 6 of another pill.  I'm also on some prescription pain killer.

Unfortunately there was no yellow brick for me to follow to be arthritis free, but there are flying monkeys, a cowardly lion and Toto.

Rheum for Improvement

Last post I talked about how JIA has affected my jaw, and I mentioned how I had to have yet another MRI due to it. Last Tuesday I went for the MRI in Hershey, and my rheumatologist just gave me the results yesterday. According to the MRI, the inflammation has returned to the right side of my jaw.  I had inflammation there about a year ago which went away after the last steriod injection.  Now it's back, and that not a good sign. The inflammation on the left side is still present and has actually gotten worse. There is increased joint damage on both sides - - another bad sign. Due to the results of the MRI, I have to get yet another (this will make three) steroid injection in the jaw joint on both sides of my face. The injections require me to be put under general ansthesia.  Then a doctor who is an "interventional radiologist" will us a CT machine to help guide him as to where to inject the sterioid into my jaw.   These injections are extremely painful usually requiring me to miss at least a few days of school.  Oh, as an added bonus, the anesthesia usually makes me throw up.

So thats the latest news with my jaw I'll be keeping you updated.