سنة جديدة سعيدة‎

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.

The Thankful Post

Okay, so I should’ve done this back when Thanksgiving happened, but if you remember, I had kind of a lot going on. Bah.

Random things I’m thankful for this year:

  • Having a job – not just that, but one that I really like and where I really like management and the other workers. I could see myself staying here until I’m done with my PhD even… which takes forever mind you 🙂
  • That school’s out for almost a month.
  • Now that classes are over, I feel like I have a few friends, which makes being in Madison a little more bearable.
  • Lotion, because my fingers keep cracking open 🙁  (also, band-aids)
  • Netflix, because it’s one of the most awesome things invented.
  • Being able to be on medicine, because I don’t even want to think about how hard the last 6 months would’ve been without it.
  • My family, who is always supportive of me.
  • Pain medicine haha
  • On a related note, alcohol
  • My sister, who is pretty hilarious and pretty much awesome
  • Egg Nog, and my annual nog binge (which was this morning btw)
  • Random guests who give me dessert! (Also, I think I’m in love with flan now)
  • My boyfriend, who is probably the nicest and sweetest and funniest person I know. Also, he knows when to kick my butt into gear, which is awesome.
  • Getting to establish a small sort of relationship with my real dad. It’s not much now, but there’s a lot of time to work on that.
  • Anti-fatigue mats
  • Christmas music will be over soon and I get my oldies station back (yeah, shut up, I like oldies)
  • I’ve learned how to buy things a little healthier now, and feel better than I have for a while, comparatively speaking.
  • Humor! Otherwise, I don’t think I’d make it.
  • And you! Whoever you are reading this- whether you’re a friend, from my family, or just some random person – you mean something to me.
  • Also, cheese.

My grades were supposed to be up today I thought, and they’re not. I think I’m grateful for that too.

I hope everyone has a safe and happy holiday season!

Thank you, Christmas break!

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.

New rheumy, new meds

Well, my appointment with my new rheumy yesterday went well. He’s a quick in-and-out kind of guy, and basically will do what I think I need, which is awesome. He put me back on prednisone, 5mg a day, and gave me 600mg ibuprofen that I’m allowed to take three times a day. But I’m pretty sure that I don’t need to take it that much. I’m just gonna take it as needed. I also got the full run of lab work done, as well as a ton of x-rays.

The steroids are starting to kick in and help with the swelling, so hopefully that’ll continue to help. We’ll look at tapering in a few months.

I was so exhausted by the end of the day. I didn’t go to my class directly after the doctor’s appt, but instead worked on a paper until a meeting at work, and then had to finish the paper. So busy!

One week off steroids

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

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.

Back-ack-ack

My back started to hurt last week. I just thought it had to do with the fact that I checked out a crap load of books from the library. But over the weekend, while at work, my back began to hurt even more. It has gotten to the point in the last couple of days where I’m basically lying down in bed, trying to find a comfy position, and not doing really much of anything else for hours… like last night. It’s really starting to be unbearable, though I slept a little better last night… but that was probably because of my half glass of wine, haha.

I’ve also been REALLY hungry lately. We’re not talking about the run-of-the-mill I-haven’t-been-eating-enough thing. Oh no. I’m getting hungry sometime between 2-3 hours after I eat – even if I eat a ton.

I’m starting to wonder if these have anything to do with the tapering of the prednisone. Today was actually my last day taking it. I really felt so much better taking 5mg every morning. As soon as I dropped the dose, swelling came back… and that’s when my back started hurting. Hmm.

I’m not excited to see the full amount of swelling come back over the weekend. I just hope things stay mild, but I doubt I’ll be that lucky. Blech.

Oh, and I’ve been having weird dreams for a while now pretty much nightly where I wake up in the hospital – without knowing what happened, of course – and the people closest to me are all there and super worried. No one ever says what happened. All I can hear is the beeping of the medical equipment, and my vision of everyone is really soft. It’s almost like waking up to my alarm clock and that noise being so deafening that it drowns out all others… and being so tired still that everything is blurry. I just kind of fall back asleep and that’s the end of the dream.

Is this me dying? Or my subconscious trying to handle how worried everyone gets about me, and my illness? It’s just too cryptic to know.

Oh medicines

So I feel a little less Hulk, but a little more like I can’t focus as well. I’m not sure if it’s just me, or if I am not handling the prednisone well. I know that it can cause mood swings, but lowered attention span? Maybe.

The prednisone really has helped get my swelling down. I guess I never realized how swollen my whole body was all the time until I started taking it. My fingers look like my grandma’s (she has really thin hands). Oh, and all of my clothes are either fitting better or falling off me… which is both great and slightly annoying, haha. It’s helped lessen my asthma and psoriasis too, which is so great because both were really getting out of control.

I have a rheumy appointment on the 30th. I’m thinking of asking to stay on the steroids, or try another kind maybe. Everything about it is so good for me. Again, I just need to figure out the focusing thing, which I’m sure he can help with. I’m excited for my appointment, because it’s a new rheumy at a new place. I think I tend to communicate better with men too, so that’ll help. I usually get along better with guys, and there isn’t as much of an awkward judging feeling as there is with women.

Last night, my boyfriend and I went to a basketball game in Milwaukee. I was kind of pensive about the whole thing, because I knew I was going to need to take more plaquenil in the middle of the game. But it all worked out great, because I got to be the go-and-get-food-and-soda person. It worked out better than I thought it would, and we had seats with a good amount of leg space, which was helpful for me and the tall guy with me.

I’m looking forward to hopefully more time to get homework done, and to enjoy the mild fall/winter that it looks like we’ll have up here. Damn global warming for ruining the earth, but less cold also means less arthritis symptoms for me usually… Oh, the conflict!

Blah

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!

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!