Category: health adventure

Mmm Sleep

Posted on by Grayson

Well, the new year is here… and so is more swelling.

I rang in the new year playing Red Dead Redemption in my boyfriend’s apartment. On a side note, that game is really fun, but I find that – like the GTA games – it gets to a point where I can’t really do big missions anymore. Oh well, the boyfriend isn’t too bad at those. Yay teamwork!

We did a really fun thing this year in our new abode of Madison – the US Bank Eve celebration. It’s more geared towards kids, but shoot for $5 a person why would an adult pass? Probably because of the lack of alcohol, haha. But it was great. The bank had places set up all over Madison that the one $5 wristband would get you into. We enjoyed some nice ice skating (complete with a nice skate sore for me), petting zoo animals, and a trolley ride through downtown guided by the first mayor! And all in glorious 40 degree weather. It only lasted two days, but I miss it so badly.

Yesterday, we went bowling too. The boyfriend is pretty good at that, but I somehow have the gift of spinning balls without really knowing how. Go figure. I had a margarita, so I’m blaming my low score on that 🙂

Off and on last night, I slept for about 11 hours or so, ending up sleeping at the boyfriend’s an unplanned second night. I kind of feel bad about it, only because I know it is difficult to sleep with me haha. But more seriously, I’m starting to feel more fatigue from my RA and the meds I’m on too. And I’m starting to feel the toll it’s taking on me. I just always worry that I’ll be too busy dealing with my own physical pain to notice how things are affecting the people closest to me. I’m stuck with pain because of what I have, but the people I care about the most shouldn’t have to suffer for that. And that’s why I act like I’m always okay. But I’m starting to learn that even my super-ability to do that is starting to have limits.

Sometimes it’s hard to tell when how I’m acting is normal or not too. More and more lately I kind of feel zombie-esque. It doesn’t seem to matter how much sleep I get or what else I have going on either. It just always feels like I’m waiting on something that’s not there. It would be nice to know what it is, and when I’m gonna get it. Seriously.

And I’m still swelling, so I think I might need to up my steroids. I might play around with it myself before my doctor’s appointment at the end of the month and see what helps. I should’ve known that 5mg/day wasn’t going to be enough without me being all placebo-effected. Bah.

سنة جديدة سعيدة‎

Posted on by Grayson

Happy new year! (well, soonish)

This has been a rather interesting year for me, with a lot of major events. I think they might be worth a little recap.

Okay, so we started off the year with posts on the horrible effects of RA and Still’s Disease. Not maybe the best way to start off the year, but I made up for it by posting about great RA-ers like Sandy Koufax, Jamie Farr, and Renoir. Then, I finally got back on track medically by going to a few doctor’s appointments and being told I should be on medicine. My rheumy was nice at first, but quickly started to suck. My arthritis was getting worse too – so bad that I decided it was time to get a disabled parking permit. I don’t know what I would’ve done without that this year.

But! Thankfully, my arthritis behaved pretty well during my college graduation and my wonderful boyfriend’s gift of a trip to go visit my extended family where I grew up in Oregon. I really miss being there for many reasons, but I think the weather is a big part of it. He’s a pretty awesome person I think, and I’m not sure how I’d get by without all the things he does for me.

I moved, twice, and started two new jobs – one at a hotel and one on campus at the Wisconsin State Historical Society. They’re both pretty awesome jobs, and they hardly seem like work… in my head at least. Stupid body. Oh yeah, and I started graduate school! Learning Arabic is pretty tough, but getting an AB in it is awesome. Also, I got a new rheumy and GP.

I began to understand what having Still’s Disease does to a relationship as things get worse. I also decided to be a little more open about my disease to everyone, with this blog being a big part of that plan. I blogged about one of my busy days too, even though it wasn’t one of the busiest I’ve had. Oh, and let’s not forget that beautiful flare up at the end of October, but I didn’t let it screw up my weekend away.

I started taking steroids, first to get rid of that flare and now to control symptoms. And now I’m also taking vitamin D and 600mg ibuprofen. But honestly the ibuprofen I think is making me sick to my stomach everyday. I thought at first it was maybe because I wasn’t eating enough, but I’ve been eating a lot (for me) lately with still the same issues. Bah!

But all in all, I’m a pretty lucky person this year. I mean, I even discovered some things I like about RA…ish. I’ve been through a lot and the stress level is understandable, but having a break from school is helping, even if I’m working both jobs more.

Happy 2011 everybody! I hope this next year brings better health for all of us.

Thank you, Christmas break!

Posted on by Grayson

I am finally done with finals. It’s sad, but at this point as long as I’ve passed my classes, I don’t even care what kind of grades I got. I’ll know after Christmas apparently, so we’ll see what happens.

As I was writing my final paper Tuesday night, my right hand went from fine to unbelievably swollen in about five minutes. I figured it was just because of me typing a lot lately, and ignored it. I then could literally feel the swelling traveling up my hand, into my wrist, and up into my arm. Needless to say, I ended up taking pain medicine and passing out.

Last night, in celebration of finishing the semester, the boyfriend took me out to the Great Dane, which was really good. I had to take pain medicine before we went, and as soon as it took effect it wore off. I’m starting to think that it might be good to have some sort of stronger medicine than that even. Gah, I really don’t want to go to a doctor and ask for narcotics. I really would love being looked at like a junky.

So I’m at work this morning, without really feeling up to it. Good news is that there isn’t a lot going on.

Between tonight and tomorrow morning, I get to finish my Christmas shopping and get to wrapping. Hopefully I don’t have to spend too long at the store. Also, I’m thinking about going with gift bags this year instead of trying to wrap things. I have a feeling my hands will be thankful.

One week off steroids

Posted on by Grayson

Well, my swelling/pain is down a little bit. My back is mostly better now. My hands are swollen still, but they pretty much always have been. My middle fingers tend to be the worst – my right one especially, but that’s because I got beat up in kindergarten and hurt it pretty good. Ugh.

It was also my boyfriend’s mom’s birthday yesterday, so I got to make Thanksgiving dinner. My boyfriend came up with a helpful and arthritis-friendly idea – to make Hungry-Man turkey dinners! His aunt usually does that for Thanksgiving. It actually was pretty good. I spent a lot of time cleaning and getting things ready, but the cleanup was pretty quick (I love having a dishwasher for this reason, and I will not be without one again!).

We went bowling yesterday too, which was pretty fun. I kind of temporarily screwed up my wrist. I picked a ball that was perfect for me at the beginning, but eventually my fingers got more and more swollen, so I got to deal with a suction-cup effect. But it was pretty fun, and I even beat everyone else one game! Without bumpers, I might add.

Now I have a weekend full of work and research. Yay huge papers!

Second day off steroids

Posted on by Grayson

And it sucks. My left hand is shuay-shuay (Arabic for meh) but my right hand, holy cow. I can’t straighten my middle finger. It’s so swollen that bending it is getting to be pretty fun also. My back seems like it’s hurting more than before. Oh, and my left knee has joined in the chorus of pain. Ugh.

The rheumy I’m going to see on the 30th doesn’t have great reviews online. I hope he’ll listen to me about needing to stay on the steroids for a bit, or finding a new medicine. The plaquenil just isn’t handling the swelling right. Also, I need real pain medicine. I’m tired of taking too many Aleve.

Blah

Posted on by Grayson

I’m tired of being on steroids. I’ve been really emotional and melancholy lately, and I don’t think the prednisone is helping that much anymore. I keep being really existential, and I think I’m having a quarter life crisis.

Also, I just got yelled at in the bathroom for using the handicapped stall by someone in a wheelchair. I was very nice and tried to explain that I was sorry but that my RA makes it hard sometimes to use the other stalls because they’re so much lower. She just rolled her eyes and nodded.

I don’t even know how to feel about that. I was in the stall for a while cause I was crying, which she must’ve heard. Is it wrong to be frustrated that she didn’t seem to understand, or am I just being a baby about my condition lately?

Kirsten Smash!

Posted on by Grayson

Okay, so it was my first day taking steroids.

I have no attention span. I keep getting hella warm/sweating, so that’s sexy. Oh, and I have like way too much energy and feel like the Hulk. I cleaned my room and organized things – that should’ve been a two day job… or at least longer than two hours.

I felt like running, but knew that was a horrible idea.

And now my stomach hates me. Sprite does not help (which might be okay anyway cause it belongs to my roommate haha). The doctor wants me to take half of what she initially said, dosage-wise, so maybe that will help.

Oh! Also! I bought mittens today. They are much warmer than my cruddy gloves. Yay warm hands!

Holy Crap

Posted on by Grayson

I have had the most ridiculous two weeks ever. My rash last week was absolutely horrible, as was my swelling (oh, and here are pics).

I’m supposed to be starting Prednisone to take care of the swelling. It’s not really an issue (comparatively) right now, but I’ll do it. I just don’t want chipmunk face 🙁

My boyfriend and I were out of town for the weekend, and any pictures of me look horrible. My face is swollen and gross. But I took some fun pictures nonetheless.

Oh, also, because of all that gross swollen body and rash and whatnot in the last two weeks, I’m an emotional wreck (I think).

I am ready to just be done with all this.

Seriously.

Oh my god, really???

Posted on by Grayson

What the fuck?

I’ve had a nasty cold. And now, the arthritis is by far the worst it’s been since I was 6 or 7. I’ve had rash literally all over my body since Sunday night, with no way to get relief. And now my hands are so swollen that it hurt to grab my backpack or steering wheel even. Oh, and the cough drops I was using had Splenda in it, so I’ve also had fun allergies to that.

Seriously, why? I don’t understand it at all. What did I do differently? What CAN I do differently?

UGH.

Emotional side effects?

Posted on by Grayson

I had a pretty good day today. I finally woke up early enough to eat breakfast at home before heading off to school. I had a midterm that I think I did well on too. The odd part of my day comes later.

I get home and I’m checking out facebook on my iPod while putting away dishes. I come across a video about a sick little girl who has JRA. She’s in a Remicade-induced remission, and says that if she stops taking her medicine the boo-boos will come back…

I broke down.

I couldn’t stop crying and I can’t figure out why. Was it because it felt amazing to finally have an affirmation of what being a sick child is like? Or was it related to not wanting to see other children in pain like that? Or even more than that, my own children?

Maybe it is for more selfish reasons. I’ve read a couple of things lately about life expectancy… Again. Why I keep on looking at these things, I have no clue. All I know is that being sick like this tends to affect how we live our lives – we can either embrace the time we have or begin to dwell on what we don’t and the bad things to come. I try to be a part of the former group but that doesn’t always work.