Nice Things

Posted on by Grayson
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 for 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.
🙂

Arthur and Body Image

Posted on by Grayson

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.

Zoltar!

Posted on by Grayson

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.

Fatigue

Posted on by Grayson

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.

Persevering in the Face of Arthur

Posted on by Grayson

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.

Happy Fourth!

Posted on by Grayson

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.

One Lovely Blog

Posted on by Grayson
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. 🙂

Chronic Pain and Your Friends

Posted on by Grayson

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.

Partners Of RA-ers And My New Pledge

Posted on by Grayson

So one of the things that get 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.

Running Grateful

Posted on by Grayson
I used to run a lot for exercise in high school. It’s one of the things that I love to do and, unfortunately, I’ve done it enough that my knees are probably my worst joints. This morning I woke up and it was so nice outside. I putzed around on the computer for a while before deciding that I was going for a run today. Because I haven’t run in forever, I had to charge my mp3 player and update the songs on there.
Since I haven’t run in a while, I alternated between running and brisk walking, to give myself a bit of a rest from time to time. I was probably out for about thirty minutes altogether, jogging around the block. Eventually, I want to work up to running up the huge hill down the street, but I know that will take time.
Being able to do any physical activity to the point of sweating felt so good. By the time I was done, I had finished a whole liter of water and was dripping sweat. It was the best I’ve felt in a while.

I think that every person is running, metaphorically speaking. We’re all headed towards a specific goal (the hill down the street, that master’s degree, etc) or, at the very least, away from something (pain, depression, personal issues). We often get so busy running our marathons of lives that we don’t stop and think about the things that we have that we should be grateful for.

I’m grateful that I got to run today. What are you grateful for?