Category: health adventure

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.

Invisible Illness Week

Posted on by Grayson

So I’ve pretty much just ignored the fact that it’s invisible illness awareness week, eh? I did have a lot of other exciting things going on 🙂


I stole this from Melanie over at College Life With Lupus, because she’s awesome.


1. The illness I live with is: rheumatoid arthritis (which causes its own collection of added problems)

2. I was diagnosed in the year: 1994ish?
3. But I had symptoms since: 1992ish
4. The biggest adjustment I have had to make is: Honestly, I really didn’t have to make adjustments. I don’t remember being without my RA, so I’ve just always done things a little bit differently.
5. Most people assume: That I am chubby and lazy.
6. The hardest part about mornings is: Getting up. Between not being able to sleep and needing to sleep more than I do, I usually just do not want to get out of bed.
7. My favorite medical TV show is: HOUSE. I kind of just generally love Hugh Laurie (yay Blackadder), but the character of House is just intriguing for so many reasons. He’s constantly in pain, sarcastic, likes puzzles…
Oh crap, I’m House.
8. A gadget I couldn’t live without is: My computer and my mp3 player both.
9. The hardest parts about nights are: getting to sleep is the worst part really. I’m a night owl, and living in the real world is lame.
10. Each day I take: Plaquenil (full day two!) and birth control. Otherwise, I get super grumpy. Also, having anemia and then menstruating… Well, it results in dizziness and just is not fun in general.
11. Regarding alternative treatments: I wish they worked more often.
12. If I had to choose between an invisible illness and a visible one I would choose: I would rather have my invisible illness and be judged when I do need help than to have a more visible one and need help more often.
13. Regarding work and career: Oh, teaching/working for the State Department/UN should be no problem… right? For right now though, working two jobs and going to grad school full time is getting exhausting.
14. People would be surprised to know: how much pain I experience on a daily basis. I don’t really complain unless it’s pretty bad, so if I’m bringing stuff up a lot, it’s really not good.
15. The hardest thing to accept about my new reality is: It’s really all about the disease getting worse and worse over the last six-eight months. This is as bad as it’s been since I was first sick. To have to slow down and take it easy – well, it’s not easy for me.
16. Something I never thought I could do with my illness was: I didn’t ever see me being able to go hiking, especially hiking down to the coast from a lighthouse in flip flops and feel alright afterwards. More importantly, I think a lot of people with chronic illnesses tend to think they will never find love. They’re wrong 🙂
17. The commercials about my illness: make everything seem perfect. That’s not how it works, bastards.
18. Something I really miss doing since I was diagnosed: Melanie said wearing heels, and I have to agree. I also really miss – and this is weird, because I’ve been able to do it for two days again – just bending my legs/joints in weird ways.
19. It was really hard for me to give up: the lie that I was alright and didn’t need any help/medicine.
20. A new hobby I have taken up since my diagnosis is: Everything pretty much, haha. Four year olds pretty much just watch Disney movies :-p
21. If I could have one day of normal again I would: Oh man, I would go running. A nice two or three mile jog, like in high school. Mmmm.
22. My illness has taught me: that other people have a lot of problems that you don’t get to see, and it’s always good to be nice and help the brighten their day 🙂
23. One thing people say that gets under my skin is: I don’t like when people suggest I am not actually sick. Like, OH MY GOD, I’ve only been dealing with this since I was FOUR. Seriously.
24. But I love it when people: can tell when something is wrong without me having to talk about it a lot
25. My favorite motto, quote, etc is: Right now, I’m very much into Dave Matthews: “To change the world, start with one step. However small, the first step is hardest of all,” and “I ain’t waiting for the world to change, gonna change the world for you.” But I’m a movie/song/book quote lovin’ kind of gal.
26. When someone is diagnosed I would like to tell them: It’s going to be a very tough road, but the journey is what is most important about life anyhow. It’s not the destination, but the ride there that matters most.
27. Something that has surprised me about living with an illness is: How some people don’t understand how bad it can be or how it affects me, and they don’t care to learn. Gah, I hate ignorant people.
28. The nicest thing someone has done for me when I wasn’t feeling well was: rub my legs, without me asking, and holding me while I cry is always pretty nice too
29. I’m involved with Invisible Illness Week because: There are still too many people who think RA is an old person’s disease.
30. The fact that you read this makes me feel: Good, and I hope it helped to shed light on some things.