Friday, December 31, 2010

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.

Friday, December 24, 2010

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!

Thursday, December 23, 2010

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.

Tuesday, December 14, 2010

Mmm Blizzards

So I didn't stay at the hotel on Friday night, but I DID stay on Saturday. We got a ton of snow, and it took me forever to clear my car off. Thanks to temperatures, it's still not all the way cleared off. Awesome.

It's officially finals week, which means I actually have to do the papers I've been putting off all semester. Crap. Good news is, after tonight, I'm done with hotel work until Sunday, so I've got plenty of time. And I'm going to talk to my advisor tomorrow about the paper for her class, because I feel lost.

I am so ready for exactly one week from now. My final final paper is due next Tuesday by 5pm, and I can start to focus for realz on Christmasy things. Oh, and random reading. I'm kind of excited about that.

For now, I'm going to try to make more headway on that paper, and hopefully get ready for my last day of classes tomorrow.

Friday, December 10, 2010

I'm Crazy

Sometimes, literally, I think.

I volunteered for an extra shift at work tonight, 3-11:30. And the guy coming after me is always late. Oh, did I mention I work tomorrow 7-3? And that we have a huge snowstorm coming soon? Laaaaammmmeee.

I'm trying to figure out if I should sleep at the hotel or go home. I'm leaning toward the former, but I just don't know. The boyfriend brought up the issue of clean clothes. I feel like I need emergency underclothes in my car at all times.

If I do stay here tonight (aka, yeah I probably will), I am thinking I will stay in one of the handicapped-friendly rooms. The shower has a low bath lip (edge? is there a term for this?), and there is a bath chair if I need it... which might be interesting to try.

Hopefully tomorrow afternoon it'll be easy to get home, but who knows with 6-12" on the way... Blech!

Sunday, December 5, 2010

I love weekends (sometimes)

I had Saturday off this weekend, because the boyfriend and I were supposed to go to a RISE conference on RA in Chicago. We had it planned - wake up early and drive down the morning of. But weather had other plans in store, so we decided that wasn't the best idea after all.

Instead, I got to watch the Oregon Ducks clinch their spot in the BCS national championship, and had a nice quiet day. I kept falling asleep, but I think that has to do with having to take the new pain meds. I seem to get pretty tired when I take them.

I think I might need to take another one. I've been standing a lot at work so far today, and my ankles are starting to plot my demise.

Wednesday, December 1, 2010

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!

Friday, November 26, 2010

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!

Saturday, November 20, 2010

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.

Thursday, November 18, 2010

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.

Sunday, November 14, 2010

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!

Wednesday, November 10, 2010

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?

Friday, November 5, 2010

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!

Thursday, November 4, 2010

Holy Crap

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.

Wednesday, October 27, 2010

Oh my god, really???

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.

Wednesday, October 20, 2010

Yuck

I am sick. I don't know exactly with what, but I'm coughing up crap. Oh, and this morning, it was pink/red in color.

Aside from coughing and being entirely way too warm for how cold it is outside, I feel alright. I'm not extra fatigued right now, which is nice.

I go to the doctor today at 1pm. I think it's just bronchitis, but I want to make sure that there is not anything else going on, since I recently started the Plaquenil.

Thursday, October 14, 2010

Emotional side effects?

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.

Tuesday, October 12, 2010

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

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.

Friday, October 8, 2010

Stomach Pains

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.

Sunday, October 3, 2010

Ode to my left knee

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!

Friday, October 1, 2010

Blah, see

Well, I'm feeling better (on again, off again that is). My throat hurts today. Lamesauce.

I finally got to spend some time with my sister. Also, I pretty much have pwned at work, making the managers super happy.

Also also, it's pretty much my favorite month ever. October not only means Halloween, but also pumpkiny foods! Mmmmmmm so good.

Friday, September 24, 2010

Side effects

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.

Tuesday, September 21, 2010

First day missing school

Well, it took a little over two weeks for me to feel sick enough to not go to school. On the plus side (ha?), it's because of eating too much last night at Olive Garden - or more specifically, getting Culvers custard afterwards. It didn't taste right, but I ate it anyhow. Damn my love of peanut butter cups.

Apparently it's pretty warm outside, but I feel pretty feverish today, and I've slept a good amount on and off. I have to work tonight, so we will see how that goes.

Bleeeech.

Friday, September 17, 2010

Invisible Illness Week

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.

Thursday, September 16, 2010

Plaquenil, Day One

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*

Wednesday, September 15, 2010

Plaquenil

After classes on Wednesday, I go to pick up my Plaquenil! Yay being excited and nervous (and definitely tired after a day of two lectures and two jobs!) at the same time.

Monday, September 6, 2010

Let's talk about sex, baby... and RA

So I was just reading a study on the effects of RA on sexual intimacy in long-term relationships/marriages. It's interesting that only a minority claim that their RA affects their intimacy with their partner, as I would have expected that to be a larger amount (note: the study did say "large minority").

But before the study got down to the vertical tango, it mentioned some of the responses that those participating in the study gave about their general relationship health/perception. It's interesting to note how many of them feel as though they are bringing their healthy partner down. There were many comments along the lines of: "feel guilty about not being able to pull my weight, etc" or "he always has to look after me or consider my ability to do certain things... strengthened our relationship."

It really seems interesting to me how many people believe that RA strengthened their relationship. This study seems to have been focused, however, on people who were already married/together when the diagnosis of RA came. I would like to see more research done on girls like myself, who have had RA for a big part of their lives or, at least, before they met their current partner. It doesn't even have to be focused on only the sexual nature of the relationship. I want to see how other younger people are dealing with the problems and insecurities created by RA, specifically pertaining to relationships.

As for myself, I believe that my RA has strengthened my relationship with my boyfriend. I believe that, as I have shared more and more about how RA affects me than others may know, it has created a better bond between the two of us. I do worry a lot that he does have to do more in our relationship, and I often feel guilty, like I don't pull my weight - financially, physically, emotionally. He has to be there more for me than the average relationship might entail. The biggest problems we tend to have seem to be on my side - I feel insecure and in a way inferior and instead of sharing that, I might lash out or become more needy, or more reserved. I tend to hide when I'm hurting or when things are bothering me, and I need to be more forthcoming with that kind of information. Even though I know that, I still find it difficult to do. There are even times - very seldom - when I get angry/frustrated that my boyfriend is the normal one. I don't even know why really, because that's just silly.

It does sometimes worry me that, statistically speaking, those of us with chronic conditions have a higher divorce rate. But I chose to believe that only really applies to the people who develop their disease during the relationship.

Would you date someone with a terminal illness?

While rheumatoid arthritis is not classifiable as a terminal illness, there are definitely enough complications that can arise from the disease itself to side effects of medications that can, in fact, be quite dangerous.

If we look at a comparison of HIV/AIDS and RA (note: I'm not saying RA is anywhere near as bad/painful/horrible as HIV/AIDS - people with that disease definitely have it worse - think of this in the theoretical), it's a similar pattern. We have a person who was (for whatever short time) healthy, who has now been informed of this disease they carry. There is no cure. There are medications, which may or may not be worse than the disease itself/may or may not help you at all. You will become very ill, angry, depressed, unable to do things you otherwise could. Sex becomes an issue, for one reason or another. If anyone within the same time zone as you has the flu/cold/pneumonia/etc, you'll get it even if you're just at home.

Slowly, you are forced to sit on the sidelines while you watch your body deteriorate, your mind following.

Would you date something with a condition like this, knowing:

  • You have to watch them hurt and get sicker, and not really be able to do anything about it;
  • You have to help them sometimes do the smallest of tasks, like open a door;
  • You'll get a front row seat to how they will mentally deal with the disease - will they lash out at you? Become so depressed that they decide life isn't worth it anymore?;
  • If you're in it for the long haul, you'll eventually have to take care of that person you care for;
  • That person might be stubborn and not tell you when things are wrong, and you'll have to learn to watch for anything out of the ordinary
Is this a burden that anyone should have to take on?

There's a saying that love conquers all, which in the day-to-day life of someone who is forever ill may or may not be true. Love certainly makes you feel less horrible, but it doesn't change the fact that you're in pain and that things probably aren't going to get that much better very soon.

Sunday, September 5, 2010

Tuckered Out

Yesterday I got to see my best friend after our schedules not meeting up for almost four months. She, another friend, my boyfriend, and myself went to the Taste of Madison, which was pretty fun. I took the bus, and then walked a mile just to get there - in about 20 minutes I might add. So with all the walking around we did, I'm sure I walked a couple of miles, and was on my feet all day, standing still for a free concert for like two hours or so.

I wore flip flops yesterday. I have an addiction to them that is so unhealthy for me. But today at work, I'm wearing sneakers.

Those shin splits just suck so bad.

Oh! Also, we saw a band on State St yesterday from my hometown of Eugene, Oregon. Go figure. They're the Blair Street Mugwumps, and I highly suggest you check them out.

Friday, September 3, 2010

Funky Rash?

Okay, so I'm not sure what's going on here. I had an ingrown hair, which I promptly picked. The next morning, I had a welt about half the size it is now. This morning, I noticed bruising in the middle and now tonight the welt is larger. I think it's just a harmless staph infection but who knows. It doesn't look that bad.

In an odd twist of events, my knee feels a little better than it normally does, especially with the amount of walking I've been doing because of school. But it does feel somewhat hollowed out.

I've also been considering the possibility that my little sister might have lupus. She always has a butterfly rash on her face, similar to pictures I have seen. I always listen to House, who tells me constantly that it's never lupus... but he's been wrong before.

Thursday, September 2, 2010

First Day of Grad School

And I'm pooped!

I had a mishap with a few buses today, walked a ton more than I was planning on, and got completely soaked with the boyfriend running to his apartment from the bus stop.

Also, my neck hurts pretty badly.

Also also, I keep freaking out about the (pretty much?) inevitable extreme physical disability that goes along with RA... and the fact that, statistically speaking, we die earlier than 'healthy' people. Being someone who studies religion, I don't really subscribe to a particular one (except maybe Buddhism, but there are even parts of that I don't agree with)... because I feel like religion was something we invented to explain mysteries of the universe and to feel more comforted on this lonely planet. So, what happens when everything is over? And, worst of all, how will that affect the people closest to me? Will they still be around to see it?

And why do I keep dwelling on that? Stupid arthritis getting worse this year >:-O

Monday, August 30, 2010

Chronic Pain and Disney Movies

Girls with chronic illnesses either detest princess stories where everything ends up okay in the end because they're unrealistic, or they love them.

My rheumatoid arthritis is the thorny rose patch and dragon keeping my prince charming away. For some, this could be taken quite literally - they don't date because they don't feel adequate or are just so ill that they don't need the extra stress that a relationship can cause.

For others, we are caught in a continuous battle to stay 'okay.' We are waiting for a cure that we know, we swear is on the way. But it keeps being delayed, and we stay stuck in our towers - alone.

Alone doesn't quite fit though, does it? In reality, we are a part of the normal world and we function (sometimes) in it. Isolated probably is a better fit.

I'm around other people, sometimes, and I do have the ability to interact with others. But still, there's a difference - even if the people around know about RA and how bad it can get. They haven't felt the pain or the other problems that can arise from a chronic condition. There's no knowledge of the isolation, the exhaustion. The worst part is, no matter how much you explain it, they won't ever know.

And so we sit in our towers, staring out the window and waiting for our rescue - one that, for the vast majority of us, we will never live to see. And there's not much else we can do but wait and hope, and try to avoid the hopeless feelings that are inevitable.

Sunday, August 29, 2010

Mulling Over Doctor's Appointments

My rheumatologist spent 15, 20 minutes maybe with me. It was like pulling teeth to get a word in edgewise, and she was clearly trying to get rid of me. She also was clearly not ecstatic that I have been taking more and more OTC pain meds... but didn't once offer to give me anything stronger.

She scolded me for that and for not taking my multivitamin. I explained how ill it was making me, despite taking it with food, and was told to either take it with food or start taking a different brand. I told her how ill I've been lately, and her one thing was to get blood drawn. Oh, and I tried to bring up that I've been pretty down for a while, and she said to tell her things specifically related to my RA - EVERYTHING is related to my RA, since it's in my WHOLE body. You have to treat the patient, not just the symptoms or your one area when you're a rheumy. Or, at least, refer me to someone I can talk to about depression and anxiety and panic attacks. Seriously.

It was like pulling teeth to get her to listen to me at all. Now, I haven't actually been to the doctor all that much lately, but aren't doctors supposed to be there for us? And help us figure out how to work with these wretched bodies we've been tossed carelessly by chance, karma, or some seemingly all-knowing creator? Isn't that why they've gone to school so long? And get paid a shit ton of money?

She's a nice rheumy, personality wise. Truth be told, the only reasons I went to see her included the fact that I've been so ill, that I wanted to start on medicine, that it was a good idea, blah blah blah. Mostly it was because I can go to the Medical College in Milwaukee for free until the beginning of November. Otherwise, I probably would have waited until I had everything set up here in Madison.

So now we come to the big question - did she know that I had this worked out with the hospital? And that she wasn't getting paid the crazy awesome amount? Was she just busy? PMS-ing? Or am I reading too much into this appointment?

It really was the first one where I've come with a list of questions/concerns/complaints and was very vocal about them, and wanting to touch everything on that list during our time. Have I become annoying enough now that I'm advocating for myself?

On the upside, my opthamologist was so nice, and has handled people with RA before including those starting Plaquenil.

Speaking of, do I really want to start this medicine? What if it makes me sick beyond all reason and I miss GRADUATE school classes? I can't afford to do that, but I also can't afford to be as sick as I am lately and not do anything about it.

Saturday, August 28, 2010

Bright Light!

Dialating eyes sucks, or at least it sucks when you have sensitive eyes and it's summer.

The opthamologist said my eyes looked pretty much perfect, and that she needed to just check the pictures before she gave the okay for me to start the Plaquenil. I'm a little nervous that I'm going to be starting that and school and my second job all at about the same time, but oh well.

I'm so tired this morning, and my whole body hurts. So lame.

Thursday, August 26, 2010

Rheumy Appt #3 Results

Well, that went alright, ish.

She scolded me for not taking vitamin D. Last time I was there, she said just to make sure I was taking the multi I was on at the time... which I stopped taking because it made me REALLY sick. She also wasn't too happy that I was sometimes, in the course of a whole day, taking both ibuprofen and Aleve. 'Tevs.

She had some labs run, to check my blood counts and thyroid - and to rule out mono, since I've been really fatigued lately. I'm 95% sure that I don't have it, and I think she's checking it as a formality really.

Oh, also, I have psoriasis. Awesome.

I'm off to the opthamologist tomorrow to make sure my eyes are okay to start Plaquenil. I am just so excited. Whewoo.

Tuesday, August 24, 2010

Rheumy Appointment #3

So I have an appointment on Thursday. I'm excited to go, but I'm also scared beyond all reason. I'm worried that the explanations for things being more difficult lately will be something that I can't handle, or that I don't want to know. I'll never know if I don't go, but I'm definitely a lot more scared to go than I am to not go. But ignorance isn't bliss, and won't ever be. Blah.

The doctor wanted to put me on hydroxychloroquine (Plaquenil) last time I talked to her, and I was really reluctant. But now I might give it a try. I hope that I can handle it well, so I can still work and go to school like I've been planning, but if not, that's alright too. I'd rather be healthier than spending more money learning more things to try and make myself marketable in a failed economy.

Why am I so scared? :(

Sunday, August 22, 2010

Two posts in one day?!?

I am REALLY bored at work. Enjoy my ramblings.

Squirrel over at Feelin' Swell: My Life with RA had an interesting post over the weekend about how she feels like she can't slow down.

Maybe it's just me, but I always feel like taking time off now will somehow lead to me missing out on the things I want to do the most. I can only remember one time recently where I didn't do something that I wanted to do, and that was on my vacation to Oregon. My whole body was just so tired and we wanted to hike up this hill, but I knew that if I did, it'd be bad news bears. I was already hurting enough as it was and adding to it would have ruined what was left of the day, and, knowing RA, probably the vacation.

I need to be able to slow down more, but I just feel like I can't. I'm enjoying my life and if that means I pay for it a little extra at the end of the day, that's alright. I'd rather do all the living I can now and hurt for it than to miss out on things like hiking from a lighthouse on a cliff down to the coast. One day, I'll probably be in a wheelchair and I won't be able to go on beaches anymore, let alone even think about climbing on sharp rocks in my flippy-floppies. That scares the living hell out of me honestly. So does the fact that people with RA die like 10-15 years before healthy people of the same age, but since I'm at work I won't touch that emotional subject. I also won't really go into my freak-out in the shower yesterday when I felt EVERY lymph node on the back of my head swollen and nasty. I'll just say that there was a fair amount of crying, followed by freaking out for about 45 minutes.

So, for now, I'll keep living at this pace. Honestly, there's more that I could be doing, but I'm going to ignore it as much as I can, in the interests of sanity.

مي حد هرتز

(read: my head hurts)

I tried some crazy flavors of ice cream yesterday, oh my gosh. Mango habenero was excellent, as was french toast & maple bacon AND pear ginger. Horchata just tasted like old horchata. White chocolate and pomegranate was too waxy... and apple cheddar was just awkward. The creamery we went to also had a mystery flavor that I swear was salsa. Also, I got to pet a baby cow! And then we went to African fest, which was awesome until we got jealous of people's vuvuzelas :(

So I'm not feeling any better today. Yesterday, all the lymph nodes on my head were either swollen and hard, or swollen and oopy/leaky... This hasn't happened to me for a really long time. They were so bad that it hurt to lean my head on anything, but my neck was getting so stiff from not resting, so eventually I stopped caring. It's still really sore, but I'm sure it'll be worse after I get done with work again.

Now I'm at work, having not showered beforehand again because I tried to give my body an extra few minutes of sleep. Apparently it didn't help at all, because my left knee is trying to kill me I think.

I'm also kind of dizzy this morning, AGAIN. I'm seriously getting annoyed with that. Bah!

Saturday, August 21, 2010

Parking Permit

I got my DIS permit just in time for a new flare. I don't necessarily want to blame it on anything, but I did enjoy a delicious nightshade sammich yesterday - it doesn't get better than a good tomato sammich... And I did a ton of walking around, including more stairs than I usually use.

Maybe I did more, knowing that I could use the permit. Maybe I did more, just because I felt pretty good. All I know is that I'm glad it's the weekend  :)

Also, as a side note, why do spell checkers still say 'sammich' is wrong? I'm sorry, but that is a word. Maybe not the for reals correct word, but enough people use it now, like srsly okies?

As another side note, I'm sorry about the above side note. I had coffee.

Friday, August 20, 2010

Yay for days off

Since I finally had a day off that wasn't a weekend, guess what I got...


Yes, that's my college tassel. Go me.
Yup, that's right, I finally did it. And I used it right away too, cause I'm awesome like that.

I thought I would feel bad, taking spots that more 'qualified' disabled people would need. But nobody was using those spots, and I actually really needed it today.

Wednesday, August 11, 2010

This Isn't Helping

So just about every morning, I hop on the computer and do a news search for rheumatoid arthritis. I like to keep up to date on medicines being developed and new discoveries... Part of me secretly thinks that there will be a cure and I'll find it via Google instead of the news for some reason.

I used to see obits with one or two really old people who had RA, with little mention of how the disease affected their last years. Lately though, I've been seeing a lot more stories on younger people dying due to RA-related complications...

Like Jim Amos for instance:
... lost his 27-month battle with an ugly strain of rheumatoid arthritis. The autoimmune disease crippled his lungs, left him a prisoner to the oxygen tanks that kept him breathing and finally took his life.

So this man was pretty young, considering, and died because of lung problems? And he only had the disease for 27 months?

What the heck???

I wrote a post a few months back on the worst things that could happen - I did investigating and found serious issues like lung problems, but not death. Yet, it seems as though more people are dying from complications of their RA. Why? Is it just a misdiagnosis?

I've been having more lung problems lately, which I'm sure is making me freak out a little more about this particular story. I do have asthma as well, so it's hard to say which issue these problems are related to. I've had this disease for basically my entire life, and was never told that this could happen. I find it alarming that this is a possibility for those with RA - to die?

Cue panic attack on dying and what happens after death - not only to me, but to everyone I love - in 5, 4, 3...

Monday, August 9, 2010

Ode to My Right Big Toe

Dear right big toe,

I've enjoyed your company for the past 22 years. I know we've had our ups and downs - me trying to stuff you into cute shoes, despite your stubbornness to disagree, running you into anything and everything in the house... Now that you have been numb for a week, I miss how things used to be. Now when I run into things, I just feel a tingly scratch.

I can feel pressure, and I can feel whether the things I touch are soft, pokey, hard, etc... But I cannot truly feel texture.

Why are you numb? This bump on your lowest knuckle? This RA nodule, it is separating me from you, isn't it?

I hope this nodule goes away. I can't stand the thought of this tingly feeling lasting for the rest of my klutzy life.

Thursday, August 5, 2010

Parking Permit

For a while now, I've been having conversations with the different people in my life about getting a disabled parking permit. I didn't want to do it at first, because I am not "disabled" and that is taking away from the people who are. I don't want to have people stare at me all stupid like when I get out of the car and I'm not in visible terrible condition.

But I called and asked my rheumy about it yesterday (technically, it was her nurse), and they're sending me the form with the doctor's information completed soon.

I have mixed feelings. I'm excited to get it, but also getting it means that I am accepting more of the disease than I used to... Does that mean I am going to start giving up more? What about those looks? Or people questioning me?

*sigh*

Also, I have a nodule on my right big toe's very bottom knuckle. I think it could also have something to do with my work shoes, but who knows. It aches and that toe is numb, so... yeah.

Monday, August 2, 2010

Scared

I feel like I'm going through the coping and grieving stages of RA again. It's not a bad thing per se, but it isn't fun either. A couple days ago, I tried to act like nothing was wrong, even though I was literally about to pass out from being so exhausted and not taking care of myself right. Then I was just angry about it.

Now I'm scared...

  • that starting school in the fall will make things worse again
  • that moving out on my own will be a lot harder than I thought
  • that the actual act of moving will consist of people doing most of it, or me trying too hard and hurting myself
  • that this job has me on my feet too much
  • that my pinky toes have gone from not pleasant looking to gross
  • that my elbows have started aching for no 'good' reason
  • that the people in my life will get tired of how much they have to help me and take care of me, and they'll eventually disappear - I've read about so many relationships and friendships falling apart because of RA...
  • that I won't be able to go do the fun things I still haven't done yet, like visiting Machu Picchu or going into the Grand Canyon or even dance at my wedding someday without feeling like I'm going to die afterwards
  • that I'll end up alone when I need help the most because I hate to be an inconvenience and I push everyone away, or tell them I'm fine when I pretty much never am
  • that I don't know whether I'm sharing enough of what's going on with others, or too much - neither option is a good one
In general, I'm just so tired. This summer, the RA has been the worst I can remember since I first got sick. And I just am not sure what to do.

Defeated

Alright, so I've decided that my arthritis is probably going to get way worse in the fall. I'll be working two jobs again, and going to graduate school, so I'm pretty sure there will be enough stress for Arthur to pipe in and be more of a jerk than usual.

I gave in today and started to look at obtaining a handicapped parking permit... I guess 'gave in' implies that there's something wrong with doing that, and there shouldn't be. But I'm still struggling with how I mentally feel like I can do anything and everything better than other people, and how my body actually handles tasks. It makes me feel kind of defeated, like the disease has taken away my will to outlast it on Survivor. In reality, this should be a good thing, right? I'm coming to terms with the fact that I do have what is considered a lifelong disability. That may not mean I'm full on disabled right now, but it's definitely a possibility in the future.

I can't keep going on pretending that nothing is going to be worse, that I'm just a normal person, or that I don't need the help that this permit can give me.

I wish I knew what it was like to just be a normal person - to get up every morning without the stiffness and pain... to be able to go running every single day... fuck, to even go to the grocery store and walk around without limping, resting on a cart, looking at the poor people confined to wheelchairs and fearing with every fiber in my being that will be in six months/one year/ten years/ever. I don't want to use a walker by the time I'm 25. I want to have kids who don't go through this, who can play with their mom and dad together, instead of just playing with dad while mom sleeps for hours on the couch because of fatigue.

AAAARRRRRGGGGHHH!!!!!

When I was eight and didn't know any better, it didn't matter. I didn't have to pay bills, or do that much homework (yay homeschooling), or even be awake 'normal' times of the day. My arthritis wasn't even as bad, at least in memory. Now every little thing has changed. I want to be normal, but I know that I won't ever be. And, at 22 years old, I'm having a little bit of a hard time handling that finally.

Wednesday, July 28, 2010

PFAM!

Go check out the latest edition of Patients for a Moment at the Queen of Optimism's site, featuring yours truly!

Yay Questions!

So I went and signed up for a formspring account. If you don't know what it is, you can go on there and ask people questions - anonymously even - and they'll answer them. You can also sign up for an account. It's pretty fun, if you're looking for something to do while dizzy and feeling sick.

I'll totally answer any question asked, no matter what it's about.

Hit me up! http://www.formspring.me/kirbir

Monday, July 26, 2010

Blech

So now I'm feeling a little bit better, but still iffy.

The boyfriend let me nap at his place before heading home yesterday, which really helped. I slept for about an hour after almost getting into an accident because I was so dizzy. We went to the store and he bought me some ginger root pills, which are not only supposed to help with motion sickness, but with arthritis too. It seems to be helping, so I'm excited about that.

I also decided to start taking my vitamins again. Hopefully I'll stick to it this time.

I don't normally like to talk about this, but in the past I've had problems with what I'm sure is anorexia. I used to run a lot (10-20 miles a day), eating nothing but some crackers with peanut butter. My latest dizzy spell business, I feel, only helps to highlight that I still struggle with that today.

I will admit, I have not been eating a lot. It just took me three hours to eat a 5 inch sub sammich. I'm at work, so that is part of it, but I'm also just not hungry. The arthritis really does a number on my digestive system, and often things are swollen to a point that I just am not hungry.

I will also admit that, subconsciously, I've been fine with going hungry because I am losing weight... even though I tell others to refrain from that same practice because of how dangerous and ineffective it is. I'm happy with things in my life, but I'm not as able to exercise as others because of the RA too.

Stupid RA.

Sunday, July 25, 2010

Like, Seriously?

My RA keeps getting worse and worse. It improved for a bit a few days ago, but I can't tell if that was good or bad, since it's now terrible again... in a different way than before - not necessarily a worse way, but definitely not good. And, I fully expect it to be a little worse, because I'm almost at that time of the month (too much information?) and RA tends to get worse for most people then.

I'm sick to my stomach, and I keep getting dizzy. I have no appetite and, as much as I try to make myself eat, I get full so quickly. I'm drinking water more than anything else, and keeping as hydrated as possible.

My legs are hurting differently than normal - more of an ache and stabbing pain, than a numb and throbby pain. I'm getting more cramps too. The achy feeling is starting to affect more places on my body now too.

And my freaking kidney was hurting the other night. It felt like I was being shived (think prisoners being stabbed with sharpened toothbrushes) hard core. I guess it wasn't that bad, except that I was driving. Oh, and it's totally happening right now. Awesome.

Also, the zappy pain is back. It's not making things easy at all. I feel like a million needles keep poking me randomly, and I don't know what to do. That's one of the signs of MS, which my great grandma had. It's hard enough dealing with just the RA, and envisioning what my future will look like then... To think that I could possibly go through the same things as her... I just don't know if I could take wasting away like that...

I'm really trying hard to not let everything that's going on affect other things in my life, but I can't control it. I can't control that I can't sleep a lot lately either, which is just making things that much worse. I'm usually pretty good about being optimistic, but right now that's just a little hard to do.

I can't help but thinking that the people in my life are going to have to help me do things in the not-too-distant future. This isn't about dignity - I really could care less about that (to a point, I suppose). But I'm stubborn, which is going to be difficult... And I feel like everyone will start to resent me. I know I shouldn't worry about things I can't control/try to predict the future, but I've seen it happen so many times in the other people I read about/talk to with chronic diseases.

UGH.

I either need a really good nap, a bunch of Reese's peanut butter cups, or (another) really good, really long cry.

Saturday, July 24, 2010

Update on Richelle Golden

Source: Salem News



The Veterans Administration (VA) is relaxing the rules for veterans who use
medical marijuana in states where it is legal. Experts and activists are calling
the decision an historic event; it will certainly change the position of many
vets currently receiving care, who until now have been restricted under VA
rules, to dangerous morphine based drugs for treatment; pills that are both
highly additive, and deadly.

...

Richelle Golden was ordered to Madigan Army Medical Center where she
arrived in a wheelchair and was promptly treated as a criminal drug user for
using medicine. The support from high ranking officers in the Oregon National
Guard has brought her no favor. She has been charged and denied medical
marijuana. It was the only thing helping her control nausea at the time, and she
became so sick afterward that she almost died.


This new decision is undoubtedly good news in her case, one where it seems
likely that someone on the Army was out to teach a soldier a lesson, and show a
side of humanity that many believe has no place in the service and in the
treatment of those who volunteered to serve their country at a time of
war.

Thursday, July 22, 2010

Storms

So I knew last night that it was at least going to rain, which it managed to do while I was sleeping. But it's been non-stop storming in my area for the past seven hours or so.

I felt great earlier today, but then as I drove into the Madison area to spend time with the boyfriend, I just started to feel downright gross. I was extra tired, hurting in odd spots (one kidney, really?), and just started getting irritable.

Driving back home later, in the middle of the thunder storms, I started to feel nauseous and slightly dizzy because of all the flashing lights. I'm really sensitive to light, so I'm sure that didn't help either.

Neither does the thought of having to wake up at 5 in the morning. Stupid work.

We're gonna see if I can avoid throwing up tonight. I hate it, which is why I avoid it at all costs, but I'm just not sure how well that's gonna work right now.

Blech.

Nice Things

Warning: I'm going to be super cheesy. Deal with it :)

I'm all about nice things - heck, I pretty much exude niceness (or try to, at least). The newest edition of PFAM is centered around niceness too - what is the nicest thing (or things) someone has done for you since you became ill?

Now, being someone who has been sick over 80% of my life, I have several options.

I could talk about how grateful I am that my mom figured out my real diagnosis instead of believing the doctors and sending me off for chemo. That's kind of a huge thing right? I think about every once in a while what would've happened had she not been such an advocate for me in the beginning... What would the chemo have done to an already frail and sickly six year old girl's body?

I could talk about how grateful I am to my entire family, for putting up with how grumpy and frustrated I get - and for everything they do to help me, from rubbing my legs to tucking me in (more recently than you'd think) to babying me (especially my equally sick baby sister - go figure).

But I think that, to a certain degree, those kinds of things are expected from a family, especially if they also suffer from the same condition. They are supposed to be there and do whatever it takes to help you out. So maybe I should think about a newer addition to my life.

I often talk about my boyfriend on here - things we go and do together, conversations we have, etc. During the past (almost) three years, he's done far too many nice things for me to keep track of. I think there are definitely a few that stand out though.

He's always been someone that I can go to and rant about whatever is irking me - whether it's inside or outside of my body.

He is very understanding and tries to make sure I'm okay, no matter what we're out and about doing... which is important since I'm stubborn and often seem to refuse to believe that I am any different than anyone else.

He doesn't let my RA limit him. If I'm too tired or hurting too much to go do something that he wanted us to do together, he'll do it anyways... which might sound weird... until you realize that it limits the possibilities for him to feel limited by my condition and resent both it and myself in the future... which, I'll be honest, is something that I worry about for anyone in my life, but especially a significant other.

Above everything else though, the nicest thing he's ever done is to suggest that I start this blog. He wanted to know more about my RA, and I wanted to tell him more, but there was a level of awkwardness surrounding things. Now, the blog gives me a way to show him - and others - how this disease does and can affect me. It's also helped me to learn more about my disease, my body, and myself in general. I've grown as a person and have become more of an activist for people with disabilities (more on that coming soon). I've also gotten to speak to a few people who have been helped in some way by my blog. It's an amazing feeling to know that I've helped to contribute to their lives.

Basically, the boyfriend is one of the best things that has ever happened to me. I understand myself more, and am more able to understand others - and help them understand RA. He also has renewed my faith in other people to understand my condition, and that it isn't something that I should be shy about discussing with others. He's there to support me, but also there to help me realize when I need to take it easy.

So then, Mr. Schultz, thank you for everything that you do for me. Even if I don't say it often, I hope you know that I very much appreciate having you in my life and that I'm lucky to be a part of yours.

:)

Monday, July 19, 2010

Arthur and Body Image

I wanted to talk a little bit more about being in the Dells last week. We basically spent all day in the water - between a few slides, the lazy River of Troy, the two wave pools, and our jacuzzi tub.

Last year, when we went to Noah's Ark, I wore my bikini with some swim shorts, because I wasn't really that happy about my appearance. I ended up ditching the shorts as we were leaving because they got pretty uncomfortable.

This year, despite the fact that I'm more out of shape than I was last year, I decided to ditch the shorts and just wear the damn bikini. I'll be honest, I used to judge people who were a little bit heavier and yet still chose to wear the skinnier girl stuff - I used to conform to societal standards of beauty. But as my RA has gotten worse, I've realized that it isn't my place to judge anyone, just like it isn't their place to judge me. I don't know their lives, what they're facing, or the things they've been through. They likewise don't know the problems I face just getting out of bed sometimes.

At first, I will admit, I was a little self-conscious - partially because of the weight, but also because of my VERY pale skin. The RA also makes it so parts of me don't necessarily look as good. For a while growing up, I hated wearing shorts because of the way my knees look. After a while of walking around though, I noticed a few other brave souls who didn't give a crap about what anyone else thought about them. It helped give me more confidence. I suddenly stopped caring what other people thought of me, and started focusing on really having fun.

It was the most fun I've had while flaring... Well, probably ever. Being in the water, there was less pressure on my joints. Even being out of the water, the sun helped to loosen them up a little. And on top of that, I felt amazing and happy. On top of that, it was a great way to celebrate the boyfriend's birthday.

Saturday, July 17, 2010

Zoltar!

So the boyfriend and I took a fun little trip out to the Wisconsin Dells for his birthday this week. We went up on Thursday and stayed the night at Mt Olympus. It was nice to hang out in the water for a while. We also had a jacuzzi in our room, and that was so nice.

I don't know how many people have seen the movie Big, but they had a Zoltar machine inside Mt Olympus. In the movie, the kid makes a wish to be bigger as he gets his fortune read by this machine. Zoltar apparently works some crazy magic, and the kid wakes up the next day in a grown-up body.

Well, I totally went for the Zoltar machine. It says that I will see better days soon, which is comforting since I've been flaring for a pretty good while now... and it also says that I'll lose my money problems if I'm nice and sincere to others. I gotta be honest, even though Big is a movie, I kinda hoped that, if I made some drastic, life-altering wish, it might come true. But instead, I woke up this morning to pain in my left ankle and knee.

Damn you Zoltar, for not working your magic on me.

Saturday, July 10, 2010

Fatigue

I was trying to figure out what the worst part of the arthritis seems to be. It's difficult to decide - I mean, there are so many factors to decide between, right?

Obviously, the joint pain/freeze has got to be the worst right? For example, I stayed over at the boyfriend's last night. As I was getting up this morning to get ready from work, I nearly fell down because my knees and hips were not willing to cooperate at all. Not being able to do something that everyone takes for granted definitely sucks.

But the fatigue is pretty crappy too. I almost feel like I could deal with the pain if I wasn't so tired all the time. The biggest thing I did yesterday, aside from putting things away in the boyfriend's apartment, was laundry... Oh, and we went to a baseball game - A nice, sit-down-and-watch-people kind of thing. Why was I so tired? It's ridiculous.

But then I was thinking that the emotional debilitation was probably the worst. I mean, the fatigue makes that worse for sure, but that makes the pain worse, which makes the fatigue worse, right? I feel upset about the things I'm going through, or like I'm not good enough for anything - that never makes things better.

So what's the worst part about RA? It doesn't seem like one single thing can be pinpointed. It's too bad - maybe if something could be, that would help find a cure more quickly.

Thursday, July 8, 2010

Persevering in the Face of Arthur

One of the most frustrating things about RA is having to deal with the sometimes-disability - sometimes I feel more like a normal person, and others I feel like a 120-year old lady. Although, this can also be a blessing, because that means that I can do more sometimes.

I often talk about how having the RA for basically my whole life probably gives me an advantage, because I don't remember a life before it. It also means that I've missed out on some things that others with RA have gotten to do - gymnastics, sports, etc.

I'm really fortunate to have gotten to go on a vacation in May. We did a lot outside that I did not expect to be able to do. My arthritis cooperated for the most part. It did get bad towards the end there, but the worst day was when we were flying back home.

I know that I've talked about my vacation a little here and there, but it's pretty amazing when you look at the things I did over those two weeks...
  • Sat in planes for like 5 hours on two separate days
  • Hiked a little over a mile into the forest over rocks to find a waterfall
  • Hiked up a butte
  • Toured a lighthouse, then hiked down from the lighthouse to the beach (in flip flops, nonetheless)
  • More hiking to waterfalls and Crater Lake
  • Walking around in the Oregon desert (yes, it does exist)
  • Climbed around in a lava field, hiked a lava butte, and toured a lava river cave
Oh, and did I mention we stayed one week with my uncle and his FIVE girls, age 8 and under?

Since then, I haven't really done a lot of physical things - other than moving and helping other people move. But I've also been working 8 hour shifts at a job where my main thing is standing at a desk...

I'm really excited to be able to go on a mini-vacation next week at a water park. I'm not sure how much I'll be able to do, but playing in the water will definitely be worth it.

Sunday, July 4, 2010

Happy Fourth!

Having seen the effects that fighting in the military and American exceptionalism have had on soldiers and the nation as a whole, I think it's kind of overrated, but whatevs.

So I've been looking for an apartment for a while here. The other day I went to see one that I did not know was wheelchair accessible... Or, if I did, I forgot/didn't understand exactly what that meant. It scared me to see everything down low - not because I have anything against people in wheelchairs, obviously. But that's always been one of my biggest fears. And I was confronted with it, without warning.

Hello panic attack!

The lady emailed me to see if I was still interested. I'm still unsure of how to respond. I think I would be way too uncomfortable to live there.

I'm sure that the situation with my knees is not helping at all. They seem to be getting worse and worse, despite anything I'm doing. Maybe I need more ice? More heat? More movement? More rest? Who the hell knows. At this point, I'd probably settle for a sucker punch to the knee caps.

The boyfriend moved into his new apartment this weekend. I'm actually surprised at how not tired I am physically. Sure, I might be sleepy, but I also had to get up at 5am, so there's that. My knees aren't really hurting any extra today than they have been. He's really good at handling the arthritis, especially since reading about the Spoon Theory. Friday, he decided that he should buy me extra spoons. So sweet.

Thursday, July 1, 2010

One Lovely Blog

Melanie over at College Life With Lupus gave me the One Lovely Blog award! Woo hoo! It's so wonderful to have friends at other blogs, and people who appreciate the kinds of things that we go through. I've been blogging about my disease for over a year now and it's been a real eye opener for me. To see how other people handle their illnesses in the sickly blogging world has changed some ideas I had about illness, happiness, and life in general. Melanie is such an inspiration, and I hope you'll check out her blog.



As a part of receiving this award, I'm supposed to pass it on to 15 (!) other blogs. Yikes! These are in no particular order:
  • A Smart Girl's Guide to Arthritis. Chick in the City is super awesome. She's funny, unique, and doesn't let her RA get her down. I challenge you to find a way that she isn't an inspiration :)
  • Living With Rheumatoid Arthritis. Andrew not only gives a glimpse of life with RA in the Northwest, but also of the men affected with this debilitating disease.
  • Judy over at RA Is Wild. She doesn't let her RA stand in her way and has flirted with the raw diet.
  • Cari at My Bum Thumb. She was diagnosed with RA in high school and is fighting her way through college. Anyone who can keep up with class work, regular life, and chronic pain deserves an award in my book.
  • The Single Gal's Guide to Rheumatoid Arthritis and Sara. She's amazing. She does so much for RA as a cause. Also, she just got back from Korea. You go girl, traveling the world with your RA.
  • Leslie at Getting Closer to Myself. The title really does say a lot. The journey of someone with a chronic illness is often a struggle with oneself. Leslie knows it all too well, battling both RA and Lupus.
  • Britta over at Chronically Young talks about her battle with Lyme Disease. Lyme Disease often seems to be discounted as something curable, but Britta is a stark reminder of the severity of the disease.
  • Lupus and Humor don't tend to be things that go together in someone's mind, but Carla knows how to write an entertaining story for sure. Also, she follows the best rule a chronically ill girl can - avoid the scale!
  • Tiffany over at Sick Girl Speaks has cystic fibrosis. Despite all the pain she goes through, and the unpredictable future that she faces, Tiffany stay strong and grateful. Oh, and she's a pretty awesome source for definitions relating to the medical world.
  • Squirrel (best.fake.name.ever) at Feelin' Swell: My Life with RA is pretty new to the blogging world. But, in the short time she's been around, she's battled with exercise, show shopping, and Doctor Who (yay!). I'm excited about the places she'll go.
  • All Flared Up's Amanda always has great bits of advice and reactions. I think my favorite is when someone didn't believe she had RA because she was too pretty.
  • Lisa from Brass and Ivory: Living with Multiple Sclerosis and Rheumatoid Arthritis. My great grandmother lost her battle with MS eleven years ago. To read about Lisa's battle with both of these diseases is just amazing. She is such an inspiration to anyone battling chronic pain.
  • Claire from Muscles and RA races bikes! Also, her little girl is super cute :)
  • Robin gives you The Truth About JRA. She tries to handle things naturally, something I really admire.
  • SuperBitch of Confessions of an RA Superbitch tells it like it is. It's frustrating to have a chronic illness, especially one that alters lives so much. It's refreshing to see someone so willing to open up to the world about her anger.
I read so many blogs that this obviously isn't a comprehensive list - just the first 15 that popped into my head. I hope that you enjoy this new collection of blogs!

Happy early Independence Day for Americans, and a late one for you Canadians, eh. :)

Wednesday, June 30, 2010

Chronic Pain and Your Friends

Okay, so we've all been there. Someone new comes into your life and you feel close enough to tell them about your RA. Or maybe, like some, you wear your RA on your sleeve and proudly (maybe the wrong word) let everyone know about Arthur and you.

It's hard to explain what chronic pain feels like. Obviously, there's the physical pain. A lot of people can't really comprehend how badly that feels. But even more debilitating (in some cases) is the emotional and mental anguish caused by a chronic pain condition. It's hard to explain what it's like to feel left out because you can't play on a jungle gym or participate in sports... or even go out sometimes. I came across this story, The Spoon Theory, from a facebook page (I Love Someone With Rheumatoid Arthritis - you should join. I mean, clearly you're here and you love me, so there. Okay, maybe not me.) It really does a good job of depicting the planning that has to go into certain days. I'm lucky enough (at least right now) that I have more than 12 spoons and I usually know which activities suck up more spoons, avoiding them whenever possible. But there are definitely days when I don't know how I got from sunrise to sunset without an IV of coffee and a pipe full of crack.

Note: Crack is not a good solution to any problems, especially chronic pain. But Angel Dust is Wayne Brady approved.

Tuesday, June 29, 2010

Partners Of RA-ers And My New Pledge

So one of the things that gets neglected a lot when it comes to RA is how those around the person afflicted handle things. It often skips the minds of those afflicted even, as we tend to get wrapped up in our own little worlds.

A new study shows that partners of those afflicted by RA show that they are as emotionally distraught as the sickly person:

Analysing the transcripts of in-depth interviews, researchers reported that all partners of RA patients reported common issues, grouped into the following areas:

Emotions: Partners commonly expressed feelings of immense sadness for a perceived loss of the future, sadness for their experiences of their spouse, but also for themselves.

Adaptation: Several of the partners interviewed hoped for a "cure" for RA with one saying "medicine can do anything nowadays, yes it's a problem but they'll give her a tablet and it will go away." Over time however, the interviews showed that partners came to terms with the permanency of the condition.

Coping Strategies: Some partners reported experiencing feelings of denial, helplessness, and concealment of both the condition and its impact on their relationship.

Support and Information: Whilst all partners interviewed were reluctant to attend patient support groups, they acknowledged their importance, with one participant stating "I think it would be really helpful to people who are newly diagnosed but I would have to have my arm twisted to go there".


I will be the first person to admit that I don't think about the impact that my condition has on anyone around me. A lot of the time, I'm trying hard not to show that I'm hurting, but that generally is because I don't want someone worrying about something that can't be fixed. I have come to terms with the fact that my life will always involve the dreaded Arthur, my nickname for my RA.

But I still never think about the emotional toll that my condition might take on the people around me. I feel bad about not being able to just go and do certain things. I'm pretty blessed to have the support system that I have, both from family and close friends.

As for my boyfriend, I usually tend to not tell him about things that are going on related to Arthur. It's almost as if I'm cheating on my boyfriend with Arthur, or vice-versa. I try to not let them impact each other. But, like all cheaters, I end up alienating one or both of them.

Arthur seems determined to cause me as much pain as possible, though I'm determined not to let him win. It is really like being trapped in an abusive relationship, only I have no choice on whether or not I can leave. Theron, on the other hand, is getting frustrated at watching Arthur's effects on me and not being able to do anything about it. And since I don't talk to him about Arthur all that much, I'm sure that makes it all the more frustrating.

I'm planning on looking into medications more, beginning by compiling a list of medications I can actually take (because of allergies) and their side effects. I'm still very cautious about medications, because even taking OTC meds makes me feel sick to my stomach. I'd rather stick to more natural methods, but I know that won't slow the progression of the disease at all.

I'm also pledging to take a large step out of my comfort zone. Both on here and more importantly in my private life, I'm going to be even more open about the problems I face with Arthur. I'm going to talk about my problems more in-depth, which won't be pretty. If this all helps to make my life and the lives of those around me feel less like we're involved in an Eminem/Rihanna song, then it's worth everything to me.

In a slightly related note, I started running again the other day. I had a lot of pent-up energy and running was always my favorite exercise in high school. I worry a little bit about falling back into my old habits and not eating very much while exercising a lot. Since I started running again, my metabolism has gotten a huge boost and I'm actually eating more than normal. I plan on running every two or three days now, no matter what. It's time to show this Arthur who the boss is.