Category: juvenile arthritis

I tried to come up with a snazzy title for this post, something about pain being the same and not making petty comments to other ill people. But I just couldn’t find the right one.

Lately, several groups that I’m a part of have begun to experience a rash of attacks on others from members of these groups. To be honest, it’s gotten me to a point of frustration where I was about to delete my blog, unjoin these groups, and quit volunteering for the organizations I work with.

I’m not kidding.

In the past week, I’ve had some people comment that others with RA shouldn’t have children because of how much of a burden we already are on our families and how in the world were we going to take care of kids? You might remember my super angry rant at the horrible insensitivity here.

Well, the latest thing in another group is that the community is super negative. The person making the comment was diagnosed at 13ish. I disagreed with her post initially, because everyone needs a place to vent and ask honest questions. That’s what that group is supposed to be, and what it is for me. And then…

This is my favorite part…

People began to berate her and say that she must not know what real pain was. Whatever, people hating more, but I let it go.

Until someone said she couldn’t possibly understand what everyone else is going through because she got diagnosed so young so she just need to shut her face.

Wait, WHAT?

Why the fuck does it matter when you’re diagnosed? You’re still dealing with horrible pain, with horrible drugs, and with terrible self-esteem problems.

If you have read my blog for a while, you might be thinking I’m a hypocrite.

In the past, I have said that, yes, I feel lucky for having been sick since such a young age (HA!). Sometimes it’s true that I don’t know what I’m missing, and I do feel lucky for that. I also believe that I’ve gotten ‘used’ – as much as anyone can – to a certain level of pain being the norm. That shouldn’t be reality, but it is for me.

By no means, though, does that mean that my suffering is any less real, any less painful in truth.

Who gets to decide whose live is worthy of ruining with pain the whole way through, or who to rob everything from by striking them with disease?

Certainly, I’m glad, no one in that damn group.

It just made me so mad. I wanted to hang up everything and give up. If the rest of the community can’t even accept the pains and horrors of being an ill child with these kinds of diseases, then how am I supposed to get the rest of the damn selfish world to listen?? It’s impossible.

And then something wonderful happened.

I got a message back from a parent of a young boy with Still’s. We’ve been talking back and forth for a few weeks, and her son is having a real rough go of things. He is so sick, and other people don’t understand him 🙁

And then I learned about another friend’s daughter and her recent health issues. She’s got an infection or something, they’re not sure, that antibiotics haven’t been touching. She can’t take her JRA meds right until this goes away. Not to mention, she feels so horrible 🙁

Just because some people who should understand what it’s like, who should be mortified that children are this sick, don’t get it doesn’t mean that others won’t. These kids make me want to fight when I’d rather give up. They’re truly amazing, and I feel so touched that they are a part of my life.

So I’d like to dedicate this post to Jordan and Zack, for fighting so hard in the face of adversity. You guys are heroes to me, without even knowing it. And you do it just by being you. You guys get gold stars in my book, pretty much for forever.

What is This Noise All About Anyway?: JRA, Still’s Disease, and Other Fun Stuff

The type of Juvenile Rheumatoid Arthritis that I have is called Systemic Onset JRA or Still’s Disease after Brit George Still. Systemic means that arthritis not only affects my joints but the rest of my body as well. There isn’t a known cause of the disease, but there are a few ideas. The “Onset” part of the disease means that an event occurs that triggers a hidden autoimmune disease. This is the most commonly accepted explanation. For example, I had strep throat shortly before the symptoms of the disease started appearing when I was about four. Nowadays, they’ve come up with yet another term for JRA – Juvenile Idiopathic Arthritis (JIA). This is meant to differentiate JRA from Rheumatoid Arthritis.

There are three major types of JRA:

1. Oligoarticular JRA, which affects four or fewer joints. Symptoms include pain, stiffness, or swelling in the joints. The knee and wrist joints are the most commonly affected. Inflammation of the iris (the colored area of the eye) may occur with or without active joint symptoms. This inflammation, called iridocyclitis, iritis, or uveitis, can be detected early by an ophthalmologist.
2. Polyarticular arthritis, which affects more girls than boys. Symptoms include swelling or pain in five or more joints. The small joints of the hands are affected as well as the weight-bearing joints such as the knees, hips, ankles, feet, and neck. In addition, a low-grade fever may appear, as well as bumps or nodules on the body in areas subjected to pressure from sitting or leaning.
3. Systemic JRA, which affects the whole body. Symptoms include high fevers that often increase in the evenings and then may suddenly drop to normal. During the onset of fever, the child may feel very ill, appear pale, or develop a rash. The rash may suddenly disappear and then quickly appear again. The spleen and lymph nodes may also become enlarged. Eventually, many of the body’s joints are affected by swelling, pain, and stiffness.

About one in 1000 children develops one of the above types of arthritis. Out of those, only about 10% are affected by the systemic variety.

How D’ya Feel?: Symptoms of Still’s

I know that there must be diseases out there where the pain is worse, even more constant. It saddens me to think about that. Now, I can’t truthfully explain the pains that I go through every day, because this pain is really all I know. I don’t know what it is like to be an abled person, someone who can be overly active and not suffer greatly for it.

The first major symptom that I had was fatigue. I was exhausted, lacked energy – for a four-year-old, that’s generally a pretty bad sign. I then developed a salmon-colored rash all over my body that really only occurred during the nighttime and disappeared by the time any doctor’s appointment could be made. Sometimes it itches, sometimes it doesn’t. Scratching it can lead to odd bumps all over the skin. Another big symptom is high fever. I once had a fever of 106 degrees, which sent me into convulsions and shakes. I also had the iritis that was mentioned in the tidbit on Oligoarticular Arthritis. They thought that I had pink eye for a while.

Other than that, there is excessive bone popping. We all know that terrible feeling when your ankle or elbow pops at the wrong time. On a normal basis, I no longer feel it because the amount of pain I’m normally in is far greater. Another problem that plagues many suffering from JRA is TMJD, or Temporomandibular Joint and Muscle Disorders. Confused? Basically, I have terrible jaw pains. I can actually pop my jaw out of place, which can be a cool party trick or a painful accident.

Other than the rashes, there are several other skin conditions that are prevalent to those with JRA. Dry skin is a big problem, which I have found only Burt’s Bees to cure. Occasionally, I will get what we call “alligator skin” – small bumps, similar to goosebumps, which bring about terrible dry skin. This condition can last for up to a month or longer. Nodules can also appear. These can resemble small pimples or giant lumps under the skin. I generally get them on my knees in pimply form. You really aren’t supposed to get rid of it through your own means. However, the pressure from them can be terrible. Sometimes they can be picked like a pimple, others they must be popped with a needle. The best solution, if possible, is just to cover the nodule with a band-aid and wait.

The biggest thing that makes Still’s Disease different from any other form of JRA is how it affects other parts of the body. My organs are affected on a daily basis. I have problems with my digestive system, which results in those annoying gurgly noises mid-class that end up distracting others. More than that, foods that I may be fine eating one day can turn my day into a nightmare the next. In the past, my stomach has suffered terrible aches for up to eight months at a time. Also, because the disease attacks my liver, I have to be careful of the medicines that I take.

And let’s not forget that teeth are also bones.

Poked and Prodded: My Life Story

Blood tests for Rheumatoid factor and lupus, which both show the adult stage of Rheumatoid Arthritis, usually fail to show any signs of JRA. Back in the day, doctors really didn’t know about JRA. When I was first sick, they thought I just had allergies. I had a whole booklet of foods that I wasn’t supposed to eat so that we could find out exactly what I had a problem with. I was a four-and-a-half-year-old banned from eating PB&J! Imagine the sheer torture! But I digress, as usual…

For months on end, they drew blood every week hoping to find what was wrong. I was anemic with a high white blood cell count. I had high levels of phosphorus, alkaline, and LDH. On occasion, I had: high AST (SGOT); low CO2 (poor lung capacity); low glucose; low urea nitrogen; high globulin; high MCH; low MVP; very high sedimentation rate; and, as I have already mentioned, a low red blood cell count.

And I was losing proteins quickly. In fact, any time I sweat or use the bathroom I lose proteins. I always eat as much meat as I can in order to get proteins back in my system. Now, I know pizza isn’t the best thing for me, but I love most meat lovers zza’s. I usually try to have some sort of nuts around, like cashews. Veggies are good to have around too. I love Caesar salads and wraps. And, thanks to Chartwells’ amazing new options, there’s an organic place to eat on campus where I can get tasty soy and tofu products too.

We got hit by a Mack truck when we got a misdiagnosis. When I was six years old, we were told that I had just six precious weeks to live, that I was dying from Leukemia. The doctors told us that, if I started chemotherapy right away, I could prolong my life and maybe even beat this cancer. Luckily, my mother had great medical knowledge and knew that the symptoms didn’t really fit. Through tireless days and weeks and months of research, we were able to come up with Still’s Disease. After searching, there was a name for the monster that was banning me from school, friends, birthday parties, and normal childhood activities. Finally, we could start finding ways to treat and cope with this disease.

Trick or Treat-ment: Limiting Foods, Gross Medicine, and Ace Bandages

With all these problems, it can be pretty overwhelming to try and live a semi-normal life.

Unlike most people confronted with this disease, I control it with Aleve, diet, and meditative pain management. Why? Because I have no insurance. I also do not like some of the (possible) side effects of the medicines out there – anal leakage? C’mon, really? I’d rather limp and have my dignity.

In all seriousness, this is really a disease that needs medical attention. I don’t personally think that all medicine, all the time is the way to go, but for some people that works. I took liquid Naprosyn as a child and it wreaked havoc on my digestive system. As I mentioned before, I do take Aleve – which is Naproxen Sodium and not that much better – occasionally. Any over-the-counter pain reliever is good for me really.

Medications used to treat JRA

First-line

• Nonsteroidal anti-inflammatory drugs (NSAIDs)
• Injected corticosteroids

Nonsteroidal anti-inflammatory drugs (NSAIDs) are usually the first medications tried to control JRA inflammation and symptoms. Naproxen sodium is the most frequently used NSAID treatment for JRA. Doctors choose naproxen based on its low incidence of side effects compared to its effectiveness. Ibuprofen is an effective alternative. But in general, less than one-third of children will have significant relief from NSAIDs.

NSAIDs and corticosteroids are most often used to control the initial stages of systemic JRA and may be used in children who have pauciarticular (oligoarthritis) with shortening of the muscles around the joints (contractures) or polyarticular disease with joint pain and swelling.

Second-line

• Methotrexate
• Etanercept (Enbrel)
• Infliximab (Remicade)
• Oral corticosteroids

Other second-line medications used less often

• Sulfasalazine
• Antimalarials (such as hydroxychloroquine sulfate [Plaquenil]
• Adult therapies, such as cytotoxic (cell-destroying) drugs and intravenous human immunoglobulin, may be used for rheumatoid arthritis in adults but are not yet proven to be safe and effective for children with JRA
• Gold salts were one of the first treatments used for joint inflammation, and you may still hear about them. However, injected gold salts have been replaced by methotrexate for the treatment of JRA. Gold salts taken by mouth (oral) have not been shown to be effective for JRA.

If symptoms are not well-controlled with NSAIDs or corticosteroids, stronger medications such as methotrexate are often used successfully. Methotrexate, sulfasalazine, and other second-line medications are sometimes referred to as disease-modifying antirheumatic drugs (DMARDs). Some experts prefer to call them slow-acting antirheumatic drugs (SAARDs).

Some children with JRA gain significant benefits from early methotrexate treatment. Although there is no definitive way of knowing which children are the best candidates for early methotrexate treatment, this practice is becoming more common in an effort to prevent joint and eye damage. Early treatment with methotrexate is often used for polyarticular JRA.

Biological therapy is a newer option to treat JRA, particularly polyarticular JRA, that does not respond to other treatments. The biological agent etanercept, which is a tumor necrosis factor (TNF) inhibitor, has had some success in relieving symptoms and decreasing the number of flare-ups. Other TNF inhibitors, such as infliximab, are still under study to treat JRA.

In one of my first posts on my other blog, I detailed how I meditate to relieve pain. That is, when I focus enough in order to do that. On a more normal basis, I actually meditate without really even knowing. I don’t even space out anymore. Instead, I focus on what I am doing but am concentrated enough that I don’t really feel the minor pains. I won’t lie and say that I am pain-free – far from it – but I feel less pain on a consistent basis than other people I know with JRA or RA.

Physical therapy is also an important thing. Water activities are better than anything else really because it’s a low-impact exercise. The warmer the water, the better. Who needs a better excuse to get a hot tub huh? Range of motion (ROM) exercises are also very important in keeping joints as healthy as can be. Regular exercise should be done when possible. By looking at me now, you’d never guess that I used to run upwards of twenty miles a day, but I did. Surprising huh?

Diet is another important part of controlling the disease. Since I am anemic and hypoglycemic, I have to make sure that I eat enough iron, protein, and sugar. In reality, the hardest part is getting the nutrients that I need daily. I’ve been debating whether or not I should set aside some money to get multivitamins to take every day. Seeing as I don’t always eat right, it’s probably a good idea, but I’m too lazy.

And if all else fails, wrap the most affected joint with an ace bandage. Seriously, it helps a lot.

The Moral of the Story: What Can You Learn About Living With JRA?

The biggest thing to remember is not to feel weird. There are plenty of people out there living with different ailments and there’s no need to feel alienated because you’re not “normal.” After all, what is normal these days?

While there isn’t a cure for JRA, remember that there are many tools available to fight the disease. With a positive attitude and a supportive group of family and friends, you can be the best you possible. Research as much as possible. Ask questions of your doctors. Be as active as you can be. And remember that I am always one email or comment away if you have questions or need advice.

Compare yourself to a hurdle runner – you have many hurdles to jump over, but if you stretch first and pay attention to the track ahead of you, you will be able to clear every hurdle in your way.