Wednesday, December 30, 2009

Chronic Pain and You

So, I'm finally free from the hardcore arthritis pain that I was experiencing. After my last post, I ended up getting a hugely swollen upper lip while my boyfriend and I were shopping in Madison. Talk about a mood killer.

Sorry about the crappy quality. Taking pictures in a Red Robin with the camera phone is a little awkward.

Speaking of boyfriends... Could your chronic pain condition be affecting your relationships? That is, of course, a trick question. The majority of people do have a problem, at least from time to time, feeling supported or knowing how to handle pain together. Sara Nash, of The Single Gal's Guide to Rheumatoid Arthritis, discusses the dangers of dating with RA.

There is also the question of the role of diet in chronic pain conditions. Want to know more? Just click here. I can tell you though that the only rule I follow is the one on aspartame, but that could just be because I'm allergic to it. I do try to stay away from a lot of additives and, when it's plausible, I do try to eat more organic foods.

Sunday, December 27, 2009

Another Day, More Rash

Here are some more pictures of rash:

This is my right knee as of this morning. You can see now the pimply nature I was trying to discuss yesterday.

This is just above my left knee. The rash that was on my knee has spread upwards again. It seems as though this spot is gaining in size as the morning goes on.

Oddly enough, rash does tend to show up in such odd places as lips and in the mouth. Here you can see my lower lip is swollen to almost twice its normal size and is dark red compared to the upper lip. Last night, the rash began on the underside of my chin and on the backside of my left hip.

I do have another large spot on my left thumb joint, but my cell phone fails to see the importance of uploading the picture. As long as I have the rash this bad and I get them up, expect to see more pictures.

Saturday, December 26, 2009

Relapse

So remember how I was talking about my arthritis not really being that bad and how much it surprised me? Um yeah, I forgot to knock on wood.

The rash I had last night and this morning was the same intensity as the rash that I experienced as a small child. It's hard to think that I was able to somehow handle the extreme itching that this rash brings along with it. In the wee small hours of the morning, it occurred to me that there aren't a whole hell of a lot of pictures that capture this terrible rash. The pictures aren't the best quality since I was super tired, but here you go:

This is my left elbow around eleven PM last night. You can see here the raised nature of this rash. Once it is scratched, it tends to spread. Earlier in the night, there were three small spots similar in nature and, unfortunately, I touched, rubbed, and scratched them. This is the resulting spread.

This is the right elbow around 6 this morning. Last night, it had no sign of rash on it at all. You can see how the whole arm seems to be enveloped by the rash.

This is a close-up of the left elbow this morning. This picture helps to show that the rash tends to center on the joints.

I can't remember which knee this is (left I think?), but I took this picture this morning. My bathroom isn't very light, so you'll have to forgive me. My knee is very swollen and covered in rash, most of it hiding beneath the skin. The rash here, which you can't really see thanks to the lighting, is bumpy similar to a pimple or boil. Combined with the itching, an untrained eye may think it is a bug bite or boil and try to pick at it - very bad idea.

This is also from this morning. The rash literally covered my whole arm. What you see here is the fading away of the rash (this time on my left wrist) in the mornings. One of the most frustrating things when we were trying to diagnose what was wrong with me was that the rash would occur during the night but disappear by the time we were finally able to see a doctor.

Again, this is the rash dissipating (right wrist). You can see the rash still present along the bottom edges of the picture and right around my vein towards the middle. Also you can see my gross sink. Don't worry, it's rust.

Again, this is the most extreme case of the rash I have had since I was very young. The rash is VERY hot to the touch and generally brings with it a feverish feeling. It is very difficult to resist the urge to scratch this rash, especially in one's sleep. The main reason the rash spread this time was because of the lack of self-control during sleep, and this is very common unfortunately. I spent a long time trying to stay awake last night despite the fact that I had to work at 8am this morning. This is complicated by the fact that I have a nasty cold right now too and had some fun coughing fits throughout the night. As such, I got a very restless three or four hours of sleep.

I hope that this helps to show some of you who may not understand exactly what happens with systemic JRA rash get a better grip on what is happening here. One of the most frustrating things with this rash is that nothing helps it feel better. No cold water, no calamine lotion (this peels and ends up begging to be picked at), and unfortunately no ingested Benadryl. I used a Cortaid spray this morning, but that only seemed to help due to the fact that the rash was already dissipating. While it is very hard to remember and follow, the best thing you can do is not scratch it. You've seen now what happens when you do, and I can tell you it isn't pretty.

In slightly related news, I fell down the stairs this week at my mom's house. My knee gave out mid-step and there just wasn't a way to recover. Honestly, that was a lot more fun than the rash and, though it is probably going to start hurting exponentially more in the coming days, I would rather fall down the stairs again than have the rash and that's saying a lot.

Tuesday, December 22, 2009

Calling Attention to the Problem

Here are some little known facts about Still's Disease:

When one thinks of diseases a child can acquire, he or she will generally think of seasonal and non-chronic illnesses, like a cold or the flu. It is startling to note, however, that arthritis is the sixth most common childhood disease, behind other debilitating diseases like asthma, diabetes, heart disease, cerebral palsy, and epilepsy.

Arthritis is also the number one offender of acquired disability in children.

Still's Disease accounts for 10-20% of all JRA cases, affecting between 25-50,000 children in the United States alone.

Out of all children with SD, all have high temperature fevers as well as joint inflammation, muscle pain, and persistent chronic arthritis; 95% have the pink-colored rash; 85% have swelling in their lymph glands or enlargement of the spleen or liver as well as a marked increase in white blood cell count; 60% have inflammation around the lungs or heart; 40% have severe anemia; and 20% have abdominal pain.

The site used for the last two facts also says that the salmon-colored rash doesn't itch. This is a lie. I personally have spent many sleepless nights scratching at various body parts due to said rash. The insatiable itching cannot be resolved through anti-itch lotions or anti-histamines. Actually scratching the rash causes it to raise above the natural skin level as well as causing the itch to get worse.

Said site also discusses the temporary nature of this disease. This is also wrong (at least regarding systemic arthritis). I got sick in November of my kindergarten year and have never recovered. A small percentage of children do grow out of the disease. However, the majority of children face a lifetime of arthritis-related problems.

The cause of Still's Disease isn't yet known. Some think it grows from an untreated strep throat, others from a microbe. Whatever the cause, it seems to be a genetic disease. Or, at the very least, the susceptibility to the disease is.

Arthritis is generally seen as a disease which affects the elderly. With the higher prevalence of RA in middle-aged people, arthritis is getting more attention than it has in the past. However, there is still the idea that arthritis is not a disease that affects children. Hopefully in the future, this will change and there will be more attention drawn to the plight of children with this painfully chronic and debilitating disease.

Monday, November 30, 2009

Update

I am pretty frustrated with my body right now. It seems like there isn't anything really that I can do right to make it better and that has got to be the most frustrating thing.

A few weeks ago, my shoulders started aching pretty badly. This same feeling moved into my neck and has made it impossible - here and there - to get comfortable. This generally occurs when I'm in class and do not have a wide desk, where I could rest my left arm on it. This same feeling makes sleeping a terrible feat, which is too bad since my arthritis generally makes me want/need to sleep for a large amount of time every night... Easier said than done when you're a college student anyway, but with the extra pain, it's that much worse.

Friday, November 13, 2009

Surprise!

Swine flu! Delicious!

The beginnings of this flu suck, for the record. Chills, disorientation, dizziness... combined with some heartburn, nausea, and dehydration.

The rest I can deal with and generally have every so often with the JRA, so they're not too bad... but this dizziness makes everything seem so crazy. I can't wait until it passes, I can say that much.

Saturday, November 7, 2009

Update

After two weeks of dealing with that terrible arm pain, I'm proud to say it's gone. The movement in my arm is a little limited still, so certain things (washing hair) are still pretty sucky and tough, but that will get better with time I'm sure.

I went and worked out the other day for the first time in a long while. It was nice to get out some of my frustration and I was pleasantly surprised that I didn't end up being in a super amount of pain. I walked/ran for about a mile and a half, biked for about two miles, and did some leg muscle strengthening exercises. Hopefully I can start working out a little more and be able to lose regain some strength that I've lost lately.

My knees haven't been too nice to me lately, but it could always be worse.

Monday, November 2, 2009

30 Things

So I was checking out one of my new favorite blogs, The Single Gal's Guide to Rheumatoid Arthritis, when it occurred to me that I hadn't ever really checked out her links section. One of the blogs that I found very interesting there, The Truth About JRA, is really insightful. This young lady is basically medicine free, how we'd all like to be. I borrowed the following survey from her.

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1993ish

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: Really, I've had this since I was about four, so I haven't had to adjust a whole lot. I do definitely hate not being able to do things "normal" people can.

5. Most people assume: that I am lazy and eat a lot. I try hard every so often to lose weight, but the physical activity of everyday can be hard, let alone working out.

6. The hardest parts about mornings are: trying to convince myself to get out of bed and sometimes just changing clothes.

7. My favorite medical TV show is: It's a tie between House and Scrubs. I'm more attached to Scrubs, but I love how House's mind works.

8. A gadget I couldn’t live without is: my laptop. On the really bad days, it can be my only real access to the outside world.

9. The hardest parts about nights are: trying to get to sleep... finding a comfortable position in which to lay... the stiffness that is brought on by the day's activities.

10. Each day I take __ pills & vitamins. I try to not take medicine. I only take a mixture of Advil and Aleve. Occasionally, I will take respiratonic to combat the respiratory effects of the disease. On a bad day (i.e., the week before last), I will take up to ten pills a day.

11. Regarding alternative treatments I: believe in and endorse them far more. Medicines and shots are part of why my disease showed up in the first place.

12. If I had to choose between an invisible illness or visible I would choose: Can I choose no illness? I guess I'd rather have an invisible illness that I can share (poor wording?) the effects of with people I am close to... although I hate it when other people judge me.

13. Regarding working and career: I have taken jobs that are easier on myself physically and mentally than working in the retail world.

14. People would be surprised to know: that I don't take five million pills and shots and instead try to control my pain through meditation and expression.

15. The hardest thing to accept about my new reality has been: Well, again, I haven't really had a new reality. I am having to come to terms with having to lean on the people around me more than I am used to when times are difficult. I hate needing help.

16. Something I never thought I could do with my illness that I did was: probably anytime I have a day out without feeling a major amount of pain afterwards or during.

17. The commercials about my illness: make medicine the end-all, be-all of solutions. You can't just treat the physical pains (especially with meds that have terrible side effects).

18. Something I really miss doing since I was diagnosed is: playing and running around without worrying how badly I am going to pay for it later. I missed so many years of school and friends.

19. It was really hard to have to give up: more of my independence recently.

20. A new hobby I have taken up since my diagnosis is: learning as much as I can about my disease. I try to eat things that are less able to hinder my body, but that doesn't always work as a college student with two jobs.

21. If I could have one day of feeling normal again I would: probably cry for a good hour or so... then spend time trying to do things around the house and where I live that are difficult for me.

22. My illness has taught me: that every good day is a gift to be embraced and spent wisely.

23. Want to know a secret? One thing people say that gets under my skin is: ... I hate it when people talk about how weird I am without knowing the whole story.

24. But I love it when people: try to cheer me up with humor, hugs, and some Ben & Jerry's.

25. My favorite motto, scripture, quote that gets me through tough times is:
"To change the world,
Start with one step.
However small,
The first step is hardest of all."
-"You Might Die Trying" by Dave Matthews Band


26. When someone is diagnosed I’d like to tell them: Don't worry. Work hard and stick to your guns and everything will be alright in the end. Learn about your body and know your limits, but push them ever-so-slightly. Don't be afraid of telling people about your disease. They will understand you better.

27. Something that has surprised me about living with an illness is: how unaccepting and judgmental people can be before they know about my illness. Also, I don't have to give up everything that I love to do in order to be pain free. Some things just need to be reworked.

28. The nicest thing someone did for me when I wasn’t feeling well was: just to take care of me and understand that I am in pain.

29. I’m involved with Invisible Illness Week because: Well, I'm really not... yet.

30. The fact that you read this list makes me feel: like you might be able to understand me and my problems in general as well as JRA.

Friday, October 23, 2009

Update

It's been a while since I wrote again. I've been hard(ly) at work on my capstone paper, doing research and working.

I've had to keep taking a lot of medicine since the last time I wrote. I generally try to not take any medicine because I hate it. I have been taking anywhere from 6-12 pills a day now though and I'm slightly worried about that.

Like clockwork, my shoulder problems are back. This time they have been so bad that I cannot sleep and am having a lot of problems doing everyday things. This morning it took me ten minutes (not kidding) to change shirts because my arm just wouldn't move the right way. My other shoulder is having problems too, but definitely not to the extent of the right one. A big problem with my shoulder having issues is that the same feeling tends to spread throughout my arm (i.e., my wrist is aching pretty often also).

For one of the first times in my life, I can say that I feel handicapped. My arm hurts so bad that I can't really do normal everyday things right (or at all, in some cases). I feel as though some people think I am exaggerating or making up problems since they are not readily seen. This is, I feel, the most problematic effect of the disease. I can handle the pain to a point and I can handle not being able to do certain things, but for people to doubt me makes all the other problems seem that much worse.

Tuesday, October 13, 2009

Blech

Since my back has been doing better, I really hadn't had many complaints.

My boyfriend and I went to Chicago over the weekend. It was tons of fun and I felt great the whole time. Late last night though, I started to not feel so hot. Right now, I know I have a fever (without checking? Gasp!) and my apartment was pretty chilly already. I am pretty tired (exhausted - we could go there) and my appetite really has been waning a lot lately.

Hopefully this is just related to my JRA (definitely more likely than not) and not because I am getting sick or anything.

Monday, September 28, 2009

Man, Time Flies When You're Reading Too Much

It sucked, but my back got better (for the most part). If I stand for a long time or do a lot of physical activity, it still aches like crazy. I could probably take more medicine than I am currently, but you know how I am with meds.

My appetite has been less lately, but I'm making myself eat, so that's alright.

I kinda screwed up my ankle today, probably trying to walk in the friggin' ridiculous wind we have going on right now. Seriously, it got super cold and windy over the past two days and my body isn't liking it. Oh well, here comes fall/winter. I wonder how early it'll snow this year? Hopefully not before Halloween.

I seem to be less tired when I sleep in my apartment and more tired when I'm at Theron's house. Why? I have no clue. It's weird though.

Friday, September 11, 2009

Back Pain

So I twisted my back all crazy-like and strained (pulled?) some muscles. It hurts like a bitch.

On top of that, I'm going crazy with homework. I feel like I'm not getting enough sleep and I know I'm not taking care of myself super well.

Also, walking a lot, which isn't helpful for the arthritis all the time.

I'm toying with going to the doctor when I have money (ha!) because when I went to the campus health center to talk about my back, the NP basically said that my JRA might be having an effect, but I know more about that so she'll just let me figure it out.

Awesome.

Monday, August 24, 2009

Impending Doom

As terrible as my arthritis has been throughout my life, there are kids and adults both who are far more worse off than myself. I have had it pretty easy, compared to many with this disease. Yes, there are other who have it easier - those who will outgrow the disease or already have done so. I am grateful every single day that I am not worse off.

With all that said, I've been feeling some odd sense of impending doom. I feel like something bad is going to happen. Normally, there is just a sense of foreboding. This time - whether it's out of fear or knowledge - I feel as though this something is related to my own health, or more specifically, the arthritis. It seems like the bad days I haven't had that often have returned with a vengeance. Some days (or even times of the day) I try to fight the pain; others, I'm simply too fatigued to do so.

I haven't been able to sleep lately either. It could be because I'm moving into an apartment with my friend Katy on Monday, nerves, or it could just be because my body is ridiculous. Whatever the case may be, I have had two cups of coffee today, trying to up my caffeine levels in order to relieve pain. I'm so tired of taking medicine. I don't want to throw a pity party, but I am not entirely sure how to handle the things going on for me right now. I guess I'm just sick and tired of being sick and tired.

Friday, August 21, 2009

Reliance on Pain Meds

So in my last post I talked about how nice it was that my new job was so much better on my joints. I didn't take any medicine before working last night and won't be making that mistake again anytime soon. When I got home, not only did my knees and ankles ache, but my shins did too. It got to the point where I was trying to get comfortable in my dad's recliner and crying alone in the family room. I did go ahead and take medicine but had to bombard my legs with pillows I stole from the family room just to get to sleep.

Could someone please tell my body to calm down?

I think the most frustrating thing about the pain is I wasn't standing a lot. I wasn't doing very much more than any other normal person does everyday. And yet, last night, I wanted to take a chainsaw to my legs because I was already in that amount of pain. Stupid arthritis.

Monday, August 17, 2009

New Job

So I started my new job today. It was amazing to come home after work without being in a world of hurt. Like I predicted, this new job is going to be so much better for my JRA. I get to sit at a desk in a big comfy chair and answer phones. I have to obviously get up and do some running around, but it'll be nice to have lower stress for my joints. I have to wear dress shoes, but if I'm not on my feet so much, that shouldn't be too bad.

My thighs around my knees have been hurting lately. Dunno what that's all about. I know all of my lymph nodes have been more swollen in the past few weeks, with the exception of Saturday through today. Of course, the past few days, I've taken meds right after I woke up to keep swelling down.

Sunday, August 16, 2009

State Fair

So my boyfriend and I went to the State Fair yesterday. I was a little worried about how I would handle it, but I think I found something that helps the pain be not so bad. Obviously, wearing sneakers instead of my flip-flops helped a lot (boyfriend's idea, of course). I took three ibuprofen before even leaving the house. More than that, though, we stopped and sat down quite a bit.

It seems like the more I open up to people about what I'm going through, the more understanding they are. Friends at work are a little more understanding when I get flustered and so is the boyfriend. If I had realized in the past how much better my life would be with a little more communication on my part, I would've started a million years ago.

Saturday, August 15, 2009

Appetite

So yesterday, I had an ensure for breakfast... a handful of chips for lunch... some popcorn at the movies... and an ensure at like eleven. I'm just not hungry for some reason. Obviously, it bothers me that I'm not eating. I usually do alright with trying to make myself eat a little bit. Right now though, I think this appetite thing is the worst it's been in a long long time.

UGH.

Sunday, August 9, 2009

Fatigue

Lately, especially in the last week or so, I have begun to deal with more and more fatigue as a result of my arthritis. It's gotten to the point where I am nearly passing out from exhaustion, only to sleep for 2-4 hours at a time (well, at least today... then again, I was up most of the night). I've been reading up on fatigue in the past few hours and found out some interesting things.

People on vegan diets fare better than those who take in dairy and meats. Prince Fielder may not be the only reason I'm seriously considering going vegetarian.

My emotional distress is probably making my fatigue worse. That's probably a no-brainer to someone not wearing my shoes, but it didn't really occur to me. (By the way, I am starting a new job next week that will be a lot better physically and emotionally for my arthritis, so that's awesometastic)

And I'm glad that I'm not on huge painkillers for yet another reason.

Thursday, August 6, 2009

Bah

I got home from work not too long ago. I feel apathetic. I need to do more around the house and to get ready for school. I really need to do more to take care of myself. I've just been so fatigued lately. Drinking Sobe helps, but maybe that's just in my head.

Plus I keep getting really cold and then really hot. :(

Tuesday, August 4, 2009

Resting

It feels overrated, but is a huge necessity for me right now.

I am so scared right now. I'm not sure if my emotional state is pushing the physical problems to be worse, or vice versa.

My left knee is the biggest problem lately. As a child, it's the one that I tripped and got rocks stuck in and the one that I flipped a cart full of stuff onto. It tends to be terribly hard to walk with one knee freaking out and the other definitely threatening to follow suit, if it isn't already doing so.

I get paid on Saturday. With the money that doesn't go to bills or savings (or gas - jeez), I want to try and take some more herbal supplements like dandelion, garlic, and ginger to help with the pain and inflammation instead of trying to depend so very much on pain killers like Advil and the like. Of course, getting some insurance and actually getting on some JRA treatments couldn't hurt either.

Sunday, August 2, 2009

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

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 the 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 the 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 the 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.

Saturday, August 1, 2009

FML

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.

Tuesday, July 28, 2009

I Hate My Knees

There's just no rhyme or reason to the pain they're making me feel right now. I feel so exhausted from simply walking around the house and performing simple household tasks that I don't know what to do. I know that if I just sit here, resting my knees, it'll hurt more when I finally do get up. On the other hand, the exhaustion makes it difficult to really want to do much of anything at all.

On top of all that, I feel like I'm making poor decisions lately, despite trying to think things over even more. I don't really get it at all, but I can hopefully figure it out. Blah.

Wednesday, July 22, 2009

Busy Month

I apologize for not writing for a while here. We've had a lot going on with my sister lately.

Yesterday we went to her EEG. I had to keep her up all night before, which lasted until about 4:30 when I fell asleep, but thankfully she was able to stay up on her own (or because of my snoring). I think I slept more there than she did. It'll be good to see the results soon, just like with the MRI she had today. Hopefully everything is okay or they can at least let us know what's going on with her poor body.

As far as I'm concerned, I've been feeling more and more exhausted. I have a feeling this has to do with keeping my sister up the other night, after working 14.5 hours the day before. I tripped Friday night on my way to a concert and my ankle and knee have both been feeling the pain. It's a pity, since my knee was doing pretty well compared to normal. Hopefully they'll feel a little better tomorrow since I've been resting them.

I have had some random pains in my abdomen lately, kind of in the kidney area, as well as the fun tri-weekly-or-so experience of my top wisdom teeth wanting to come in and then changing their minds. That's definitely making life fun. Ah well, c'est la vie, right?

Thursday, July 9, 2009

For Reals, Knee, I Get It

You suck.

I haven't really taken medicine for a few days because I hate taking it everyday for what could be the rest of my life. I don't like thinking about that prospect. Today, instead of just hurting when being moved, my knee hurts all the time. The pain is much less than it was before, but a little more constant than I'd like, obviously. There is also a little more pain in the calf muscles on the same leg, so I'm sure that isn't helping.

I think I might need to give in and take meds.

Crap.

Vitiligo

That's the verdict. My sister has the same terrible skin condition that Michael Jackson had. What an odd thing to find out the day of the man's funeral. Go figure.

Tuesday, July 7, 2009

Ugh

My sister's appointment with the dermatologist is this afternoon. She's terrified, and so is everyone else. If she doesn't have this tuberous sclerosis, things could be much worse.

My left knee has been bugging me for about a weekish now. Unfortunately, there's not much that I can do to make it better. Even taking pain pills, which we all know I hate doing, doesn't really help that much. I had the great idea the other night to get ahold of some needles. Maybe if I grind up the meds and do whatever junkies do to make powders liquids, I can just inject my knee with meds and see if that helps. Of course, I lack just about anything I'd need for that, but that's alright, because I'm sure it'd be bad.

Monday, June 29, 2009

Contentment

I am sunburned and very tired, but probably the happiest I've been in a long time. This vacation was exactly what I needed and more.

Noah's Ark is America's largest water park and it shows by how much you have to walk around there. The big boy wave pool really is a big boy wave pool - yikes! The rides were a ton of fun. My boyfriend and I did some other things, like Duck rides and boat tours, the deer/other animal feeding/petting park thingy, and more. It was so much fun, especially House on the Rock.

I miss it so much already, but life must go on eventually I suppose.

All that's been hurting lately is the sunburn stuff. We did a lot in the water the first day and I think that was enough water therapy to help my body out. Plus, someone is very considerate about how things affect my body, so it's easy to stay within my comfort zone.

My appetite has been having a problem lately, except for reaaaallly late at night (like now for instance). Annoying.

Tuesday, June 23, 2009

I Have Internet Again!!!!!!1!

That was the longest weekish of my life.

I'm going on vacation this weekend.

My hunger is waaay back in full swing.

My sister got BadgerCare and has separate appointments for an MRI, EEG, and a dermatologist.

I have to go paaaaaaack!

Wednesday, June 17, 2009

Moving

Sorry about the lack of updates. I had concerts and events galore this past weekend and I'm just two days away with being officially done moving, though there will still be things to move in and out of houses, storage units, and garages.

I worked 8-330 today after moving stuff last night, then spent most of tonight moving the bulk of what was left in the other house tonight. I am just completely drained. *le sigh*

Oh, and if you're interested in the Iran thing, I've been following that reaaaally closely on my other blog in the meantime.

Monday, June 8, 2009

So...Tired...

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.

Friday, June 5, 2009

The Hunger

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.

Tuesday, June 2, 2009

And Another Thing

I keep losing a lot of hair lately. My appetite still isn't back to normal, so I'm not sure if it's due to a lack of food or vitamins or stress or what's going on.

This sucks.

Cramps

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.

Tuesday, May 26, 2009

But I'm Not Hungry!

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 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.

Monday, May 18, 2009

Seizures

My sister and I went to see Star Trek Monday, but she was feeling really odd and nauseous. As we walked around Barnes and Noble searching for a place to sit down, her whole body went limp and she stopped responding to my voice. I eased her down to the ground and held her head in my lap as I watched my sweet baby sister helplessly seize and shake. It took me a moment to realize what was happening, but as soon as I did, I had help.

There was a woman behind me with her cell phone already out who was able to call 911 within seconds of when Kelsey's seizure started. Even more luckily perhaps, a gentleman who works at the store is married to a woman with epilepsy and was able to help me handle the situation. Unfortunately for myself, he arrived just a short time after I put my finger in Kelsey's mouth to stop her from biting her tongue off. I do not really regret that decision, but I'm thinking it's not so good that I still have no feeling in the tip section of that finger.

The seizure lasted between a minute and a half to two minutes. It was the longest-shortest time in my entire life. My sister is like my daughter, is my best friend, and one of the people that makes my world a better place. Sure, we fight a lot, but I think that she and I both know how very much the other loves her. The ways in which her body contorted and twisted, trembled and shook - there are no words which can describe the terrible mark those sights have left on me.

As Kelsey started coming out of her Grand Mal seizure, I was sure she was dying. Her clenched jaw began to ease up, but her breathing was still so labored, almost non-existent; her eyes were still in the back of her head and her face was still the palest I've ever seen it. The man whose wife had epilepsy was talking me through the situation, telling me that she would be alright, but there was a big part of me that couldn't believe this Good Samaritan.

Nothing... nothing... finally a breath. I laid her down on the ground in the open area which had now become our ground zero. She kept crawling around, squirming and grunting. I just kept talking to her, saying her name, and telling her that everything was going to be alright... even though I wasn't sure it would be. I had to believe, if only just for her. It was a few moments later that the paramedics showed up. 

Altogether, about five minutes had elapsed from the time my sister passed out. I was very impressed with the quick response from the EMTs. The both of them were very helpful and I was so grateful to have these men who knew how to handle both the situation and someone who is younger and very confused. The younger of the paramedics was very good with Kelsey throughout our time with them.

Once the paramedics had gotten some vitals from my sister and vital information from myself, we got Kelsey onto the stretcher and headed for the elevator. Kelsey still doesn't remember being fully with it during this time period, but she was so scared. She kept talking about how she wanted our mom, that I needed to be right with her, and that she didn't want to go to the ambulance. I had tried to maintain my cool throughout the situation, but seeing her so confused and so very out of it made my heart drop.

Once we got down to the ambulance, the paramedics wanted me to sit in the front seat, where Kelsey couldn't see me. I began to call my parents and let them know what had happened now that I could count on paramedics to care for my sister. My mom sounded brave on the phone, but I could feel her heart sink; the situation was the same with my step dad. The paramedics came over and let me know that I could come sit right next to Kelsey instead, helping the two of us feel a whole lot better.

We sat in the ambulance for what felt like ten minutes before actually leaving for the Children's Hospital. En route to the hospital, my sister finally came to completely. By this point, we had talked five or six times about what had happened, but this last time there was a different look in her eyes. She understood what I had said and started worrying about our financial situation instead of her own health. She also stared making more jokes, so I knew that she had come back. She didn't really recall any of the events of the day or even the night before.

We finally got to the emergency room entrance of the hospital after almost losing Kelsey to traffic during the ride. Her stretcher wasn't secured all the way and she started to drift towards the doors. The paramedic in the back didn't notice right away, but I did. After everything we'd already been through that day, I had to re-lock her stretcher into place too. I'm just happy she didn't fly out onto the busy road behind us.

We were shown to Kelsey's room and she was able - for the first time - to move on her own. The attending nurse got some more vitals and then left us to get Kelsey into her hospital gown. She was still amazingly dizzy and it was near impossible for her to stand on her own for longer than a second. We got her changed into her gown. It was the first time we'd been alone since we'd left the car before ten thirty. Understandably, after the day's events, we hugged so tightly and began to cry. It was about this time that my parents showed up, turning the crying duo into a foursome.

We were in the hospital for a few hours. Between phone calls and text messages, most of anyone important knew about the situation relatively quickly. The nurses got Kelsey on a saline IV, then ran blood tests on electrolytes, an EKG, and a CT scan. After all those tests, there wasn't any reason found for Kelsey's seizure. She only has a 30% chance of having another seizure again in her whole life, but that won't prevent me from watching her like a hawk when I can be around.

Sunday, May 17, 2009

I Kneed Less Pain

There is just no way to feel alright with this pain.

My patellas feel like little bitty balloons smashed between a femur and a tibia. But why? Let's take a look at this site:
Because of the loss of the gliding surfaces of the bone, people with arthritis may feel as though their knee is stiff and their motion is limited. Sometimes people actually feel a catching or clicking within the knee. Generally, loading the knee joint with activities such as walking long distances, standing for long periods of time, or climbing stairs makes arthritis pain worse. When the arthritis has gotten to be severe, the pain may occur even when sitting or lying down. The pain is usually felt in the inside part of the knee, but also may be felt in the front or back of the knee. As the cartilage is worn away preferentially on one side of the knee joint, people may find their knee will become more knock-kneed or bow-legged. 

Someone who has arthritis of the knee may experience pain, swelling, and a decrease in knee motion. A common symptom is morning stiffness that lessens as the person moves around. Sometimes the joint locks or clicks when the knee is bent and straightened, but these signs may occur in other knee disorders as well. The doctor may confirm the diagnosis by performing a physical examination and examining x rays, which typically show a loss of joint space. Blood tests may be helpful for diagnosing rheumatoid arthritis, but other tests may be needed too. Analyzing fluid from the knee joint may be helpful in diagnosing some kinds of arthritis. The doctor may use arthroscopy to directly see damage to cartilage, tendons, and ligaments and to confirm a diagnosis, but arthroscopy is usually done only if a repair procedure is to be performed. 
It definitely does feel as though the cartilage in my knees is almost non-existent. My normal approach is to try and rest my knees. Seeing as I'm slowly starting to nod off here, that should be no problem. However, the best thing I could do is to take an anti-inflammatory and do nice low-impact activities with my knees... Mayhaps now that I live at home (on a lake), that won't be as much of a problem for the summer.

Tuesday, May 12, 2009

I Feel Odd Today

My body really isn't in all that much pain. My knees are sucky, as usual, but in reality I've got it good right now. My sister, on the other hand, doesn't so much.

One of the things that many people don't remember is that teeth are bones. Many people with Still's end up having poor dental health. Sadly, if someone doesn't have dental insurance, the quality of their dental health goes down even further.

My sister is on day five of having an ear/sinus infection. Normally, this wouldn't be so bad. However, since she has poor teeth, this has led to some... interesting problems. For the past five days, she's been in excruciating pain. Not fun.

There's really not a lot one can do, aside from taking care of one's mouth and visiting the dentist regularly. Unfortunately, my family fails to do either. *le sigh*

Friday, May 8, 2009

Sleeping on a Couch

This does not help the shoulder problems at all. Then again, moving crap didn't either. At least now it's manageable pain.

For those of you who may not have Still's, the shoulder problems that I have at least leave me feeling as though I have a perpetual dead arm. If you've ever had one, you can appreciate how difficult it becomes to do everyday things like open doors, move things around, or even stretch. 

There is really no comfortable position that I can get in to solve this problem. I am trying to refrain from taking pain medication, because I really just don't like how often I've had to take it in the past and how it makes me feel. However, because of the swelling and the fact that I have to work the next three nights, I might just have to take something...

Thursday, May 7, 2009

Shoulder Update

Alright, so aside from my elbow being a little shaky from carrying down a whole room full of stuff yesterday, my pitching arm is just about back to normal. The only real effect left from all that jazz is a little bit of muscle soreness, so that's pretty good. My other shoulder, though, is not so happy. It's my non-dominant arm and doing more with it was probably not the best of ideas, but I didn't have much of a choice, so oh well.

I might go pitch again today, but I'll probably let it wait until sometime next week instead. I could probably do it with relative ease today, but something tells me it may not be the best thing since I have to unpack my car again. We will see.

After a week here of very little sleep, I'm just thinking about taking a nap until checkout time on this poor naked mattress.

Tuesday, May 5, 2009

Knees

Alright, so if you've ever watched baseball closely, you know that some pitchers swing their legs fun ways as a part of their release. Girls trying to be silly and have fun are no different.

As a small child, I busted my knee in a grocery store (Note to parents: Do not let your kids stand on the edge of the cart). We got a free bag of ice out of the deal, but I'm pretty sure I'd rather have kept my knee intact. I've done other random things to both knees, making them possibly the worst joints in my body... although, I think my shoulder is catching up. 

In any case, my knees were already bugging me as of late, but the whole pitching for way too long thing yesterday? Yeah, that didn't help so much. I do the leg swing around thing, so the knee on my stationary left leg is very unhappy. Thankfully, all I have to do is start moving crap out of my dorm room... 

*eye roll*

Honestly, my whole body is starting to feel repercussions for my love of baseball today. But, hey, the second day is always the worst.

Pitcher's Shoulder, Part Two

Uggggh.

I went and did an hour and a half of pitching against a wall yesterday. I shouldn't have gone so long, but it was good to get my arm moving and also work on my ability to catch ground balls. I know now first-hand why pitchers have to wear jackets when they're not pitching and why there aren't a lot of complete games pitched.

Today's treatment: Cold compress, cold bath, and lots of rest (if possible, since I have to move).

Monday, May 4, 2009

Pitcher's Shoulder

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:
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.

Friday, May 1, 2009

Birthday Fun

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.

Thursday, April 30, 2009

Still's Disease? What's That?

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 the 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 starting 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. An 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 on 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 everyday, because this pain is really all I know. I don't know what it is like to be a 'normal' 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 disappearing 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 Oglioarticular 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 pop 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 are
 TMJDs, 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 goose bumps, which bring about terrible dry skin. This condition can last for up to a month and 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, alkalines, and
 LDH. On occasion, I had: high AST (SGOT); low CO2 (poor lung capacity); low glucose; low urea nitrogenhigh 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 was started on 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 the searching, there was a name to the monster that was banning me from school, friends, birthday parties, and normal child 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 reeked 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. Since I really don't have any experience with other forms of medication, I went a-searching the interweb to bring you information on this front:
First-line medication. 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.10 Ibuprofen is an effective alternative. But in general, less than one-third of children will have significant relief from NSAIDs.5

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.105

Second-line medication. If symptoms are not well-controlled with NSAIDs or corticosteroids, stronger medications such as methotrexate are often used successfully.105 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 benefit 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.5

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.11

Medications used to treat JRA

First-line

Nonsteroidal anti-inflammatory drugs (NSAIDs)
Injected corticosteroids

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, that 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.10

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; 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.

I have a feeling that a lot of it has to do with attitude. There is an older woman who works in the shoe department at work with RA. Her hands are deformed terribly and yet she still works. She still tries her hardest to not let the disease get to her. I almost always have a positive attitude. Even when I'm in pain, I know that things could always be worse. I still have pretty good control of my motor skills and I'm not in a wheelchair (which, by the way, was a prediction for around age eight when I was diagnosed).

Physical therapy is also an important thing. Water activities are better than anything else really, because it's 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 everyday. 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.