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. :)