PFAM: A Call for Submissions

Posted on by Grayson

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here’s September, and not only am I beginning to eat healthier, but I’m also changing jobs in a few short weeks.

So with that in mind, here’s the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I’m excited to see what happens with the upcoming changes I’m making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog’s name
3. Your post’s title
4. Your post’s URL
5. Awesomeness

I’m excited to read about the changes you’ve made in your life!

When Ugliness Returns

Posted on by Grayson

I was SO excited after my wisdom tooth surgery – my arthritis had dissipated and was calm. Everything was wonderful…

Until the Friday afterwards, when people at work fought and I got to go deal with it. Ugh.

I won’t get into the whole situation, but just a few days before as soon as laughing gas hit my face, my body was perfect. Yeah, okay, so I had some gaping holes where a few teeth used to be, but other than that… Returning to work made my body hurt exponentially more.

So what did I do?

Well, I’ve found a new job and will be starting that in early October. While I will be sad to leave some of the people that I currently work with, being in management while going to school and handling this disease is just not something I can do. Part of me feels like I’m giving up, but the other (bigger) part knows that I’m doing what’s best for me and that I’m being realistic.

My new job will let me sit down all the time. I won’t have to run around and move heavy things. I also have no direct interaction with angry people, nor do I have to make it right. Instead, I will spend my time captioning  one half of a phone call in order to help people who are hard of hearing better understand their friends, loved ones, and random people. So I also get to feel a lot better about what I do for a living.

And they have benefits. I dunno what they will be like and won’t know until orientation I’m sure. But that’s exciting, and hopefully helpful. And I will get full time hours too. Yay.

Now I just need to get through the rest of the month and the six days I will have to work overnight before I am done. And talking to my boss tomorrow morning. Awesome.

La Vie Boheme

Posted on by Grayson

The latest Patients For A Moment (or PFAM) blog carnival topic focuses on music, which I absolutely love. Phylor has asked us to explore, essentially, the soundtrack to our illness. I find it funny timing that she would pick this topic. Here’s why.

Last Sunday, while amping myself up for my wisdom tooth surgery the following Tuesday, I did something that I’ve always wanted to do. I woke up late. I popped open a gigantic bottle of Arbor Mist Sangria, my favorite wine. And proceeded to drink… while watching the Blu-Ray DVD Rent: Filmed Live on Broadway. It is the filmed final performance of the one play that I can say changed my life.

When I was in high school, I was in an abusive relationship with this kid pretty much from my sophomore year until graduation, give or take a few break-ups in-between. My senior year of high school is when the bulk of the break-ups came, because I realized what a bad situation I was in and I knew I needed to get out. Up until then, I had a kind of ‘whatever’ mentality regarding things. I knew that people didn’t believe I had an illness, especially with the lack of doctor’s visits due to my family’s income. I figured that I had found the best I could get – which clearly I now know was so far off.

The biggest change my senior year of high school was that my best friend, my uncle Nathan, moved back to Eugene with his family. Having just gotten out of the army, they moved in with us. Nate has always been a huge help and encouragement to me. So when he and his wife introduced Rent to me while I was home sick for a few days, my eyes opened up to a lot of things. Each time I listen to or watch Rent, I take something new away from it. While I enjoy the movie, released in 2005, I will always love the music itself more. But watching the actual play, on Broadway, was sadly something that I wasn’t able to do. So when I saw this DVD last weekend at Barnes & Noble on clearance, I snatched it up quickly.

If you don’t know the basic story line of Rent, it’s about a group of friends dealing with disease, discrimination, relationship issues, poverty – life, essentially.

Here are just a few of my favorite songs and lyrics from Rent:

One Song Glory:

Find/the one song/before the virus takes hold/glory/like a sunset/one song/to redeem this empty life/time flies/and then no need to endure anymore/time dies

Life Support:

Look I find some of what you teach suspect/because I’m used to relying on intellect/but I try to open up to what I don’t know/because reason says I should’ve died/three years ago

Will I:

Will I lose my dignity?/Will someone care?/Will I wake tomorrow from this nightmare?

But my favorite song above all is I’ll Cover You. If I posted it, I’d just end up posting the whole thing. The lyrics are here and the song itself is here. The reprise is here and, no matter how many times I watch or listen to this play, I can usually hold back tears except for when Collins begins to sing. His relationship with Angel is so sweet and, spoiler alert, when Angel dies because of AIDS, it is the saddest thing.

But not all of the music from Rent is sad! Check out songs like La Vie Boheme and Out Tonight. Rent has something for just about everyone, and is truly a celebration of life – with all the good and bad included. That’s why I really think it is the soundtrack to my illness. I have good times, bad times, and horrible times as well. There are times when I want to go out and dance my butt off, and other times where I feel like no one is there for me and I’m all alone dealing with my disease.

Supergirl!

Posted on by Grayson

The boyfriend and I went hiking yesterday out at Devil’s Lake. It was gorgeous and we had a lot of fun. It was nice to do something more physical on my day off from work. I haven’t really been able to do that lately.

But holy cow, we were like billy goats up there. We started on this trail that was 0.4 miles up the side of a mountain-esque hill (compared to Oregon, Wisconsin has no mountains). But what we failed to realize until it was too late was that it was a back and forth trail, basically straight up the side of this thing.

I’m glad we had our walking sticks. And that the slippery, dusty rocks didn’t let either of us biff it all the way back down.

My body is less sore than it should be. And I’m not excited about it. That just means it will get worse on that second day. Lame.

But I was SO impressed with both of us and our abilities to keep going up this trail – and then down another one. My legs got real shaky and, in some points, my left knee wanted to give. But we made it and rewarded ourselves with a dip in the lake.

And we went to see The Tempest at the American Player’s Theatre. It was pretty awesome. I forgot how funny that play in particular was.

And now I’m at work. I’m sure that by 3pm when I get off I’ll be super tired. Yay.

Fun Links

Posted on by Grayson

If you haven’t taken a look at my team’s page for the 2011 Run/Walk to Irish Fest coming up in August, please head on over and take a look. The money goes to help our cause. Even if you’re not in the area, we’re always looking for donations!

Did you know that there is a rap song about RA? Well, there is! Head on over and take a listen. MOEtivation samples a Nina Simone song, which I think just makes it that much better.

Opportunity, one of the rovers up on Mars right now, apparently has an arthritic shoulder problem. Who knew machines could get arthritis too?

The Dutch are currently working on an implant to be put in the neck that could help control inflammation for RA.  Right now they’re moving into a possible trial phase. I think this could be an interesting device, but it is hard to work to cure a disease when you don’t know the cause.

Did you ever wonder where jacuzzis come from? Rheumatoid arthritis and wine. Mmmmmm.

Sometimes it feels like you need a little luck to get through bad days. These jerks have hogged all your luck. Nah, but seriously, that is a pretty neat story.

2011 Run/Walk to Irish Fest in Milwaukee

Posted on by Grayson

HEY YOU GUYS!

Do you want to do something awesome?

Good!

Please click this fun link here and take a look my team’s page for the 2011 Run/Walk to Irish Fest in Milwaukee, Wisconsin. If you’re local, consider signing up for my team! If you physically cannot – or are too far away – think about donating, eh? If you’re not in the position to do either, then just root on my team and try to spread the word 🙂

The event is sponsored by Abbott Immunology and we all know how much I’m in love with Humira – especially now that I figured out stomach shots are SO much better than thigh shots. Yay!

Chicago (again!)

Posted on by Grayson

Wow. I am exhausted…ish. I should be WAY more exhausted than I am though I think. So this Humira stuff must be working 🙂

I did not get called back for The Voice. I hit a flat note in my song and my eyes met with the judge in a horrifying moment and we both knew I wouldn’t be anyway. I say, oh well! I tried out and it was fun (aside from being a mere FIVE hours of basically standing the whole damn time). It doesn’t make sense for me to go be on the show right now anyway. I’m finally really happy with most everything going on and don’t want it to change.

But the boyfriend’s birthday in Chicago was pretty fun. We went down Friday and enjoyed the Brookfield Zoo. I was super proud of us that we remembered to bring the sunscreen 🙂  Then we had some delicious Connie’s Pizza before getting up early Saturday for me to stand in long lines and him to wander around Navy Pier. It was a tense, and yet relaxing, few days off.

I’m doing my Humira shot tonight and, hopefully, miss some of the fun injection effects while I sleep.

Tomorrow I have a fun list of things to get done before work. I’m hoping that I can get it done quickly and be kind of lazy… although I kind of really like playing housewife. And lately I’ve been dressing the part, in my cute retro outfits.

One of my friends got a tattoo today and I kind of really want one now! I’m looking at getting Arabic writing, but am unsure what to get. But all the words I have written down are awesome, like “strength” “fighter” “perseverance” and “determination” which Angelina Jolie actually has on her arm. Cool.

Also! Please check out my latest post over at Achieve Clinical filled with summertime tips for us spoonies 🙂

It’s almost moving time

Posted on by Grayson

So it’s exactly one week until the boyfriend and I get the keys to our place. I am super excited about it, all except the actual moving part of course. We’re going to have tons of help, so that should be no issue. But I also find myself extremely worried.

I won’t have a day off until next Saturday, which is fine, but I am worried about how my body will react to all this working and then having to lift things. I am so much weaker than I was last year.

Well, weaker isn’t the right word.

I’ve been working out and building muscle. It’s easier for me to lift things. But I also get tired so much more quickly now and that’s really what I’m worried about. I shouldn’t have to carry anything that heavy, but it also doesn’t feel right letting other people do all of the hard work.

No, weak is not the right word. Useless is too strong. Inept makes it seem too odd.

I guess there’s no one word to encompass it, and maybe that’s the fun part about dealing with a chronic illness. There’s no easy way to explain to others how I feel. I am worried that my body will crap out on me, right when I need it to work the most. And worried about other people seeing. I’m okay with my boyfriend seeing how tired I am (to a point) or close friends. But even then, I distance myself from them and don’t really allow them to know how I’m feeling. I feel like I ‘complain’ too much about my body as it is, and don’t want to burden everyone with everything all the time.

After the move, I will just be counting down until August when I can look at switching doctors or at least visit a GP who can give me pain medication. It would be nice to have something stronger than 600mg ibuprofen right now.

Exhaustion

Posted on by Grayson

In the last couple of days, things have been crazy at work. One of three girls who work the desk quit with no notice, the third to do so in the last month. And, with my recent promotion, guess who gets to handle the brunt of things?

Yup, me.

Monday was a normal 8 hours, as it was the day before the other girl quit. Tuesday I worked close to 12 hours. Wednesday was a normal 8 hours. And today I work a whopping 11 hours. So basically, I will have worked 40 hours in four days, with two more work days this week left for me.

Holy cow.

I can’t do this anymore. My body is breaking down and I spent all of last night lying down with my entire left side attempting to ruin anything I wanted to do.