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.

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.

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.

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.

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.

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.

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.