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.

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.

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.

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.

Impending Doom

As terrible as my arthritis has been throughout my life, there are kids and adults both who are far worse off than myself. I have had it pretty easy, compared to many with this disease. Yes, there are others 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, 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.

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 every day. And yet, last night, I wanted to take a chainsaw to my legs because I was already in that amount of pain. Stupid arthritis.

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.

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.

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.