Category: rash

Guess Who’s Back? (rash is back)

Posted on by Grayson
on left, picture of Kirsten with purple cloth across chest and rash on face, chest, arm; on right, a reddish text box with white text "Guess Who's Back (rash is back) Not Standing Still's Disease"
Yesterday was one of the roughest rheumatic days I’ve had in a really long time.
I woke up in extreme pain, with my hip feeling as though I had bursitis again. My knees and ankles were horrendously achy. It was so bad that I set up a ton of pillows, broke out the ice packs, and turned on my Oska Pulse.
All day, I was just in a lot of pain. It wasn’t until T came home that it got even worse – the rash hit full force.
Because I struggle with temperature regulation issues, I often get warm randomly. This was different, though. I knew there was rash. Listen, this damn rash is something I remember dealing with all my life. Sometimes I wrongly assume that I have it, but that’s pretty rare. It’s obvious to me when it appears. It hasn’t really popped up recently, though, because my disease has been well-controlled.
I got up and went to the bathroom, nearly crying when I saw just how bad my rash was.
It switched sides throughout the night, moving from my left to my right over about an hour. Soon, it was on my legs, too. Sleeping was hard, though not nearly as hard as when I was a child. I remember barely sleeping, tossing and turning in pain. This time, I just couldn’t get to sleep and then I was out quickly for a few hours at a time.
Not everyone’s rash itches or is uncomfortable. If I recall correctly, I think it’s under 10% (5% maybe?) who do have that… and I’m one. Hooray?
I’m hoping that this is all due to the quickly-changing weather we’ve been having. We had a horrid storm run through the night before with temps still near 100 at night. As much as I want to, though, I can’t exactly rule out that this isn’t from upping my nortriptyline, either. I hope that it isn’t, but only time will tell.

 

Still’s Disease Community Project

Posted on by Grayson

OMG YOU GUYS I’M SO EXCITED.

Okay, maybe that was a little much 😉

But seriously, super excited.

Laura over at Still’s Life had a brilliant idea. And I’m not using the word brilliant just because she’s from the UK and I love the way that word sounds in that accent. It is actually a bloody brilliant idea.

In her latest post, Laura spent time documenting her Still’s rash and what kinds of symptoms present systemically when her rash appears. She had the wonderful idea to create a kind of Still’s Community project. If you’ve been keeping track of your rash, or you’re interested in doing so for a bit to help out the community, please contact her! I, for one, will be monitoring my symptoms a little more closely and trying to capture pictures of my rash in order to help with the project.

Why?

When I was first diagnosed waaaay back in 1995ish, there was literally nothing online about Still’s Disease. Even now, there are some support groups and some of them have pictures, but you have to dig for them. In fact, I’ve actually noticed a lot of my pictures show up if I search images for SD. Go figure 🙂

But I digress…

Imagine a family who has an ill child and they’re desperately trying to find the answer. They go online and they find a ton of pictures, complete with lists symptoms and pains that present with the rash. Imagine a child not having to wait over 6 months for a diagnosis, but instead being diagnosed early on enough that medications can give him or her hope of remission. Imagine what we could do for others who go through this pain – how we could help stop some of that pain for others. Imagine you taking part in that, and how awesome you’ll feel when you know you’ve helped people like that.

So pleeeeaaasssse, please, please consider hooking up with Laura or myself on this project so that we can help raise awareness and understanding!

Physical Activity

Posted on by Grayson

I am really frustrated with my body right now.

I haven’t really done a lot physically since I came down with bronchitis right before Christmas. I’m really at the tail end of it right now, so it’s more like I just have a cold. The last big physical thing I did was go to the mall a few weeks ago.
Yesterday, while showering, I totally nicked the back of my left ankle in a couple of spots. It bled for a while and didn’t seem to want to stop. I had to tape some gauze on the back of my heel to stop the bleeding after a good ten minutes of applying pressure.
Last night I went to a basketball game with the boyfriend and his dad at my university. It was pretty cool. My school won and all in all it was a pretty great game. We got to sit court-side, which was pretty awesome. The seats weren’t the most comfortable, which was not a big deal. I was pretty worried about how close we were because I didn’t want to get in the players’ way, so I kind of twisted and bent my ankles to keep them off the court. Apparently, that was a really stupid idea.
The boyfriend and I went to Discovery World today, which was pretty awesome. If you haven’t gone, it’s definitely a fun thing to eat up a couple hours of your day. It does involve a fair amount of walking though… which shouldn’t have been a problem right?
Apparently, I’m wrong about that. I am super wiped out physically right now. We were only in DW for not even three hours and I was wearing sneakers. I started feeling the urge to limp pretty quickly, unfortunately, but I wasn’t going to let it stop me from enjoying my time.
I feel fatigued, sick to my stomach, and I definitely have rash all over my face. My eyes have also been redder, which worries me since I have had a history of arthritis interacting with my eyes. It always bothers me when I feel like I can’t do normal people things without feeling completely and utterly wiped out.
It’s not just how I feel physically though. How do I go about turning down something fun because of how I think I might feel? I’m one of those people who likes to try new things all the time and go out and be active. Unfortunately, it seems as though my body doesn’t quite share my enthusiasm.
Since I fell down the stairs right before Christmas, my arthritis has gotten worse. I guess that, in the past, I haven’t really had to put very many limits on my physical activity. Unfortunately, until (or, the worse option – unless) the disease begins to be more dormant again, it seems like I’m going to have to learn to listen to my body’s warning signs just a little better. For now, I have an ankle to ice and keep up.

Another Day, More Rash

Posted on by Grayson
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

Posted on by Grayson
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.