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