How Do I Loathe Thee? Let Me Count The Ways…

Posted on by Grayson

Alright, so a lot of people say that they get their best ideas on the toilet right? You can consider me one of them right now. For people who maybe don’t quite understand how Still’s Disease/JRA affects the ‘everyday’ stuff that I do, I thought maybe I’d just list the things that are harder to do when the arthritis is acting up (like it’s been lately).

One of the reasons I got this idea on the toilet is because most toilets are fairly short. The way that knees have to bend in order to use short toilets makes me want to scream. Sitting down is terrible, but getting back up is the worst.
I live in a house with a washer and dryer in the basement and my room on the second level. To make it up and down the stairs, I have to hold the handrail and have my other hand on the wall for most of the way down. The impact of going down the stairs on not only the knees but also the ankles makes me want to just sleep downstairs in the recliner like I’ve done a lot lately.
Just walking hurts. As of late, I can walk fine if I don’t have to pick up my feet. I shuffle along a lot when I am wearing normal shoes, but it’s usually better for my knees and ankles if I wear high heels or some other form of elevated shoe. I’m sure it doesn’t help that I have no arches in my feet to help absorb some of the impact from walking.
I’ve already talked about how arthritis can affect my internal organs and loves to frequent my stomach. Eating is a day-to-day thing with me, whether that’s the result of arthritis (like it normally is) or still a semi-eating disorder problem. Since it also affects my other organs, however, they have to work extra hard to get their jobs done. My liver, for example, would be absolutely at a loss if I went out and drank a ton. Yes, there are actually medical reasons why I do not drink so much.
Lifting things can definitely be tough. Earlier this year, in one of my first posts, I talked about my pitcher’s shoulder problem. When my right shoulder goes haywire, I can usually pitch to a wall or another person and loosen up that joint enough to only be sore from the movements.
Sleeping is usually either extremely difficult or way too easy for me. I’m either in enough pain that I can’t sleep for hours on end (take last night for example, when I didn’t end up sleeping until about three in the morning) or I’m so exhausted from doing normal day-to-day things that I pass out. If I sleep in the wrong position or on my wrist, that can be a bother for days and weeks. I’ve had to wrap my wrist and elbow every day for two weeks in some cases before I really get any relief.
My arthritis usually seems to get worse right about my menstrual cycle. So along with the PMS and mood swings, I get amped up doses of pain. This isn’t always the case, but it definitely is something I’ve had to become used to. Another thing – and I won’t go into too much detail on this one – that gets more difficult is being intimate. Different movements and different positions can really end up taking more of a toll on my body than I let on.
Like I said in my last post though, the mental anguish over not being able to do things like go to the bathroom without pain (is that too much to ask?) is terrible. I think the biggest fear that I have in life is that I will end up in a wheelchair, unable to finish my schooling, and unable to do things for myself. If the pain from arthritis doesn’t keep me up at that, that will.
That’s a pretty good starter list for right now. As I go through more pain, you’ll definitely hear about it.

FML

Posted on by Grayson

Ah, yes, the knee saga continues.

So I went up to my boyfriend’s house the day before yesterday to play house and keep the lonely kitteh company since my boyfriend’s newlywed mom and step-dad were out of town still on their honeymoon. My knees were kind of being annoying when I was driving up there, but this subsided a little when I began to entertain said kitteh. We decided to walk to dinner, which really wasn’t that far at all, and should’ve been no problem for me, right? Well, in my mind it shouldn’t have anyway.
When we got back, I was so exhausted. I took enough pain medicine to deal with it for the night, but that didn’t quite help the next day. I worked the closing shift last night and was already in so much pain and exhausted before going. Standing around and walking briskly all night was not really helping.
When I got home, my mom had me use her TENS unit from when she had been electrocuted a few years back. I really didn’t want to use it, half out of being stubborn and half because I was freaked out about it. It did help enough for me to sleep though, so I’m sure I’ll continue to use it in the future.
The pain is terrible, but I think the mental anguish over the fact that I can’t do certain things right now is worse. When I was diagnosed with JRA, the prognosis for most kids was that they would end up in a wheelchair by the time they were eight. The prospect of that happening at any stage in life is so frightening, but to know that I maybe could’ve/should’ve already been in one gives such a foreboding feeling. It’s part of why I am stubborn and try to push myself to do as much as I possibly can, but I’m feeling like those days are quickly coming to an end. I need to figure out how to do something different, because during the school year, I can’t sleep in until eleven out of exhaustion.

So…Tired…

Posted on by Grayson

I’ve been working without a day off for a while here now. It’s not terrible, but I’m definitely getting pretty tired of it. I had a cramp yesterday in the back on my right leg that didn’t go away until after work today. On top of that, it’s time to get certified with the cleanliness of our store, so I’ve been in contact with a lot of chemicals today that, with my allergies and asthma, I probably should not be. Needless to say, I’m still a little light-headed. Oh well, tomorrow is another day.

I’m beginning to think that my leg cramping is a result of not having arches. It always seems to happen in my right leg, starting with my right heel. It should be interesting to see exactly what’s going on there eventually.
Well, I’m pretty beat. I get to wake up early-ish and work just a few hours tomorrow, but I’m sure it’ll be full of busy things to do and more physical pain. Oh joy.

The Hunger

Posted on by Grayson

My appetite, she has returned. It is a miracle!

Or it could be that the last thing I had to eat was a cinnamon roll and coffee at ten thirty or so last night.
In either case, it’s nice to be hungry again. My knees are a little tired from running around a lot yesterday in Appleton with my friend Kyle and all the working I’ve been doing lately, but I’m definitely having fun. Next weekend, we have Kelsey’s MRI and EEG appointment. I also have two concerts to go to and we move to the house up the hill from us. So busy! I’m sure that I will be hurtin pretty good after all is said and done.

Cramps

Posted on by Grayson

No, not the girly kind. Bear with me while I explain some background junk before getting to the cramps.

It’s important to note the kinds of physical problems that accompany autoimmune diseases like Still’s Disease. In allergies, the body tries to fight against what it deems to be a threat. However, this threat is the host’s body itself. In autoimmune diseases, the body tries to overreact to each finger pop or leg bump to the coffee table. Not surprisingly, many people with Still’s have allergies, asthma, or any other immune system issues.
In most people with Rheumatoid Arthritis, there is an antibody which is directed at the body itself which causes the biggest problem. Rheumatoid Factor (RF) does not exclusively mean Rheumatoid Arthritis, but with the right symptoms it can. Other diseases with high RFs are hepatitis, leukemia, mono, lupus, and Sjogren’s syndrome.
After that medical lesson, let’s shift our attention back to the title.
In addition to my Still’s Disease, I have:

And some pretty interesting abdominal issues as well, but that’s a part of the JRA itself.

The amount of proteins and vitamins that my body doesn’t hold on to correctly cause a lot of problems. My fingernails and toenails suck, which isn’t that big of a deal unless you like to be barefoot like my hippie self does. I also get these terrible cramps, generally when I’m working, that extend from my lower back down to my calves. Sometimes these cramps get so painful that I can’t move my leg, which is not all that conducive to retail life.
I’m thinking it might be time to start taking the multivitamins that I bought forever ago.

But I’m Not Hungry!

Posted on by Grayson

My sister has not had another seizure. She has an appointment to do an MRI and an EEG on June 11th at Children’s Hospital. Hopefully, if there’s anything wrong to find, those in-depth tests pick it up. She’s been sleeping a lot lately, which she is worried about, but I am convinced it’s a good thing. My finger is no longer as numb as it was… or I’m getting used to this strange feeling. The infection seems to be gone, or mostly so, and I’m hopeful that I’ll be fine.

My left shoulder is feeling a little screwed up at the moment because I fell asleep in a chair this morning for a nice little cat nap (forget the fact that I had a nightmare). My knees have been doing a lot better lately, which is both nice and odd.
The biggest problem that I am having right now is the loss of appetite. When I was about seven, I began to throw away a lot of my food. I just simply wasn’t hungry. My mom maintains that she is to blame, because she had apparently said something about me being chubby, but I have no recollection of that comment at all. I just remember not being hungry. I lost a lot of weight and got down to under 50 pounds. Occasionally, I will experience this same problem. I know that I have to make myself eat at least three times a day, but there are days where it just isn’t high on my priority list. Usually, this only lasts for a few days, but it has been known to go on for weeks on occasion as well.
This past weekend, my boyfriend and I went up to Appleton for the D-3 World Series in College Baseball. I didn’t eat a lot, not because I didn’t want my boyfriend to spend a lot of money (which is also true), but because I simply wasn’t hungry. On Sunday, I ate almost a whole Subway sammich and a cookie. This started for me on Thursday night and I have yet to really come out of it. At least there are enough delicious foods in the fridge to hopefully keep me eating three times a day.

Pitcher’s Shoulder

Posted on by Grayson

Every so often, I get what I like to call pitcher’s shoulder. Basically, it feels as though my shoulder is detaching from torso. This feeling generally starts in the lower neck – sometimes as a crick, other times on it’s own – and moves down to the top of my shoulder. This movement also causes the top of my arm to ache terribly and can make it near impossible to move, let alone do anything else. Occasionally the pain will move down my arm until it hits my fingers.

When I was younger and didn’t so much understand my body, I used to try and stretch out my shoulder to the point that I would pull muscles in my arm. Needless to say, I’ve grown smarter since then and have since stopped using that method.
It is hard, though, to know how to take care of this kind of injury. There is a reason, though, why I like to call it pitcher’s shoulder (apparently I’m not alone in this). The only real thing that helps my shoulder is to play catch. Unfortunately, I don’t always have the ability to play catch, so here are some alternatives that may help you out if you also experience pitcher’s shoulder:
  • Icy Hot products
  • Heat therapy patches
  • Pro-Ice wrap (expensive!)
  • Rest (apparently that’s supposed to help, but never does for me)
  • Working out. If you strengthen the muscles in your shoulder, it shouldn’t happen as often. This is a nice concept in theory, but not entirely accurate for those of us with Still’s.

Since I can’t go play catch by myself at the moment, I’m using the Wal-Greens brand of hot patches. It’s not helping a ton, but it feels a little nicer at least. Pitching really is the best way to work out this pain.

Edit: If you’re coming across this sometime after 2019, I have hypermobility and the pain I’ve described here is from a subluxation or dislocation.

Birthday Fun

Posted on by Grayson

I am entirely too exhausted. Why? We’ll start at the beginning.

I work in retail and I pretty much work everyday, one way or another. Last week, I worked everyday except Wednesday. It’s not super demanding on a normal person really. However, if you have JRA and you’re standing for six to seven hours everyday after walking around all morning, it get a little tiring. I go to classes in the morning and then work late into the night, so it makes it difficult to get any rest.

Last Sunday was my 21st birthday, so needless to say my friends wanted to take me out. Saturday at midnight (Sunday morning, whatever) we went out to La Cage, the gay bar/club in Milwaukee. It was amazing and that’s totally my new spot. I feel a lot safer there than other places because everyone there is so caring and nice and I really don’t have to worry about – well, I digress…

I danced for about two and a half hours non-stop before they started closing down the club. When I was in high school, dancing was my thing. I could never take dance because of my JRA, but I’d go to every dance and just keep going for hours. My friends and I choreographed dance routines to songs and it was so much fun. Obviously, I’d pay for it with a physical “hangover” the next few days. Needless to say, after not dancing for so long, the pain was far worse this time. I was tired enough the next day, but it’s really the second day after that the pain sets in. I did not want to move at all. A week later, I’m still feeling it… kinda.

I went to a Brewers game with my boyfriend Tuesday night and our tickets were all the way at the top of the stadium. It made for a great view, but there were so many stairs! I had so much fun and it was a great game. I wouldn’t have traded it for anything though. 🙂

Along with all of this, the elevator in my dorm building has been making some… odd noises. I’ve been trying not to take it, because that’s just creepy. This means more stairs time, but I live on the fifth floor. Add into that the fact that I go to and from classes and work and social gatherings probably half a dozen times a day or so is what makes it an issue.

I took the first of four finals today. It’s pretty nice to be almost done with this year of schooling, but that subtracts sleep (and sanity) from the equation. One of the most important factors that many people fail to address when they discuss Still’s Disease is how much the physical limitations affect the mental state of the victim (that was the best word I could come up with, so forgive me).

As a younger child, I think that it was a little easier to accept. Doing ‘x’ hurts, so I’ll just sit here and do ‘y.’ Obviously, it sucks that I couldn’t go do certain things with the other kids, but younger kids are more accepting of why people can’t do certain things. As Ive grown up, I’ve seen that other people are more closed minded than I would’ve ever imagined. When I can’t participate in certain activities, I find that people don’t care to understand why. Instead they blame it on this or that, failing to listen to the real reasoning. Between that and my stubborn nature (Taurus!), I don’t feel as though I can just sit here and do the easy things. I feel like life is a challenge – one that I intend to participate in as fully as possible. If that means that I get a little extra tired or sleep through classes some days (oops), then so be it. I’d rather be as alive as I can than sit here wondering what it’s like to get a dance routine going in a club or go hiking on the coast.

This post is a little disorganized, so you’ll have to forgive me. The amount of sleep that I’ve gotten as of late is not a lot.

Still’s Disease? What’s That?

Posted on by Grayson

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) 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
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.

Howdy

Posted on by Grayson

I have Still’s Disease (also known as Systemic Onset Juvenile Rheumatoid Arthritis). My life is centered around the things I can and can’t do, although I tend to push myself a lot to feel more normal. It’s not easy growing up not being able to do the normal little kid activities like dance, sports, or even sometimes just walking around the house. I’ll talk about my youth more in the next post.

This blog will have advice & hints on how to make it through the hard days, celebrations on the good, and commentaries on the normal. It’ll chronicle my JRA, be a guide for people who need help managing pain, and for those interested in making a journey to self-discovery. I’m here to show how bad JRA can get and how quickly it can get better… or far worse. I hope that this helps others out there with this very uncomfortable disease.