Year: 2010

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.

A Day in the Life of an Arthritic Graduate Student: Rheumatism Style

Posted on by Grayson

In honor of World Arthritis Day, I wanted to write a post about how a relatively normal day in my life goes. I didn’t have to work my hotel job today, thankfully, so it made things a little less busy… But not much.

I woke up way later this morning than I normally do, because I was having trouble sleeping last night. I should have gone to bed right when I was tired enough to, but I still had homework. Stupid school. I have class at 8:50 in the morning. The bus (when I take it) stops near my apartment at about 7:40 – which coincidentally is right when I woke up this morning. I had laid out my blue outfit for today, because I was pretty sure I’d wake up later than I wanted anyway, so I didn’t go through the half hour ordeal of deciding what to wear. I take a quick bathroom break, brush the teeth, and make sure I have my medicine before scurrying out the door.

My car does this funny thing with the security system where sometimes it won’t start for ten minutes (long story short: the system got screwed up when we had a family friend put a tow hitch on the car in 2006). It doesn’t happen that often, but of course I was already running later than I cared to be, so guess what? 🙂

After finally hitting the road, I had an easy drive to school. I used to park in a garage, but that ends up costing at least $6 a day, depending how long you’re there. Using my handy dandy disabled hanger-thinger (that’s the technical name, see), I park one street down by a meter. Having my hanger-thinger means that, as long as the meter is for 30 minutes or more, I don’t have to pay the meter for parking. What a lifesaver!

Where I park is at the bottom of a HUGE hill. Luckily, there’s a free bus that runs between where I park and where my classes are… which, since I was running late, I missed. So I got to hike up Bascom Hill, which normally seems to take people five minutes. It takes me at least ten, and I have to stop for breaks because my knees are so tired already… at 8:35 in the morning.

I get to my classroom about ten minutes before Arabic starts. We had some homework last night, and we always like to compare beforehand, so I like to get there a little earlier. Oh well. Class goes well, and I’m off back down the hill to Starbucks for my pumpkin fix and some food so I can take my Plaquenil around 10am.

At 10:30, I head over to my work study job at the Wisconsin Historical Society. It’s pretty awesome… Except when I have to search books (i.e., compare books we’ve received as gifts to copies we own to determine which copy is better) and I have to go up and down a ton of stairs.

Or I can take the elevator that’s super old and one of those pull-the-metal-hole-filled-door-across kinds. But usually there are enough people using carts to reshelve books that it’s in use a lot. It’s definitely a work out, but a fun job nonetheless.

I then leave either an hour or half an hour before I go to my Islamic studies class. I left an hour early today, because I wasn’t feeling too great, and I took the opportunity to grab lunch real quick. I also registered to vote! I caught the bus this time, but I still had a ton of stairs to navigate – unless I wanted to endure more hill. Not good options to choose from. An hour and fifteen minutes of class with my advisor, and I’m home free.

Then comes my walk down the hill, again. It’s about half a mile from the buildings I have classes in to my parking spot. Downhill, it’s so much easier – though, there are a lot of people who want to go faster than I can.

I use my time not at my other job to run around and get some things done. I run to Walgreens to refill my Plaquenil, before heading to the grocery store for, well, groceries. I get it all upstairs, in just two trips, and put away. And then I decide I’m going to clean, vacuum, and do laundry. Speaking of which, my clothes should be dry! Going up and down the two flights of stairs for the laundry doesn’t help me being tired, haha. But my cow is happy that I cleaned.

But now I’m settling down with a delicious Hungry Man dinner (there’s no way I was cooking tonight!) and watching Hot Fuzz while getting some homework done. Reading, reading, reading! Oh, and Arabic writing too. I really do like Arabic, even if I feel like I’m catching on slowly. At nine tonight, it’ll be snack/Plaquenil time. Hopefully, I’ll get homework done quickly and can get to bed a little early.

I’m definitely ready for the semester to be over… I hate being so tired, but I do really love school and learning.

Stomach Pains

Posted on by Grayson

So for the past week or so, I’ve been getting some intense stomach pains. I thought maybe it was time-o-the-month related, especially since I like to skip periods and I just started the first one I’ve had since the end of July when I got really sick because of it.

But I don’t think it is after all.

I have a doctor’s appointment on the 15th. Hopefully I can make it until then without needing (relative term!) to see a physician. Otherwise, I’ll get to wander over to the lovely urgent care clinic or, even more wonderful, the ER.

FML.

Ode to my left knee

Posted on by Grayson

Dear left knee,

I know that I was really stupid when I was younger. Climbing on shopping carts without enough weight to balance my body and getting a cart flipped on you was probably pretty crazy of me. It hurt pretty hardcore, but hey we got a free bag of ice out of it.

We’ve been through a lot together – sleepless nights, painful hikes, experiments with ace wraps and the like. We’ve also been experiencing this new medication together. I know you don’t get to see/deal with how sick it can make me – when I’m not eating as much as I should or decide to contort like a normal person.

So far though, this medicine is being a good experience I think. You aren’t hurting as often. When you do hurt, it’s less than it usually has been. I’m hoping it stays that way, because I cannot handle another weekend like I had a few weeks ago.

So, left knee, keep up the good work!

Side effects

Posted on by Grayson

So I am pretty sure my recent stomach problems are related to my new meds. How annoying! I find something that helps my RA and cheers me up and lets me live a more normal life, only to have similar stomach problems to before when I was taking way too much Aleve and ibuprofen.

I am so ready for a day off Sunday. Also I miss my sister. Not seeing her really since I moved is lame. Damn work and school and work and sleep.

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.

Plaquenil, Day One

Posted on by Grayson

So I took my first Plaquenil last night… I slept like a baby. I was ready to be up and awake at 5 this morning, but slept a little later. I was still out of bed by 6:45, which is at least 15 minutes earlier than normal.

I felt really prepared for my day and focused on my classwork. The only problems I had all day with the medicine were related to nausea. If that’s the only problem I’m having with initially starting a medicine that’s chemically more complex than anything else I’ve ever had in my body is awesome. It just really managed to heighten senses already there – if something makes me feel nauseous, it did it to a worse extent today. But if that’s all I have to deal with – spidey senses 🙂 – than, I’m down with that.

Also, my hands aren’t swollen at all. I don’t think I’ve ever seen this before.

I enjoyed a great night with the boyfriend because I wasn’t focused on being in pain and trying to avoid thinking about it. Today was probably one of the best days I’ve ever had, and I’m so overwhelmed right now.

*deeeeeep sigh of relief*