Monday, June 27, 2011

Achieve Clinical Post!

Oh man, I almost forgot! My latest post for Achieve Clinical just went up!

http://www.achieveclinical.com/news/working-with-arthritis-my-experience/

Moving Done!

Well, pretty much.

And I feel, relatively speaking of course, great. I've spent a while each of the past three days enjoying the fact that our apartment complex has a pool, heated to 84 degrees. We had just about everything moved over on Saturday, thanks to my boyfriend's family and close friend. And we spent yesterday getting the last few things out of our other places and getting things all settled.

And, for the first time in a year, we have cable! I'm loving the Smithsonian channel right now, and we've only had this up and running for about five hours today.

Tomorrow is my last day of freedom before returning to work. Laaaaaammmmeeeee.

Wednesday, June 22, 2011

I recorded my Humira shot... Kinda

I tried anyhow. You can have fun watching me:

Pre-Humira shot- http://www.youtube.com/watch?v=RYIowWW-x44

Post-Humira apologies- http://www.youtube.com/watch?v=Jv5lC0cRdTs

Yay shots.

Saturday, June 18, 2011

It's almost moving time

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.

Thursday, June 16, 2011

Exhaustion

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. Lame.

Wednesday, June 15, 2011

RA Superbitch

I found out about RA Superbitch's passing a few days ago. I did not know her all that well and we only had contact a few times, but she was so inspirational. She stood for strength and the ability of someone to handle some of the most difficult problems one can be handled in life.

I think that it's hard to deal with anyone's passing, especially someone that you looked up to. I was shook by news of her death. I knew she had not been well, even for a spoonie, for a while but I don't think anyone in the blogging world expected her death. Or the two recent suicides from others suffering from RA in one of the support groups I'm a part of - RA Chicks.

Death cannot always be looked on as horrible though. I think the reason we see that is we are selfish. We are angry that we no longer have that person's presence in our lives - and sometimes jealous that we aren't the ones relieved from pain. At least, I found myself thinking that, and I don't think I'm the only one.

Saturday, June 11, 2011

Bobdammmit

It's not like I'm not stranger to the pain my arthritis causes. I've dealt with it for almost 18 years now and I'd like to say that I think I handle it pretty well. But this change to affecting my hands more is still driving me absolutely bonkers. Like seriously, this is way too different body. I do so much more with my hands because I can't do as much with the rest of my body.

It's like all those little tiny spots in my hands, all those small intricate bones, are all swollen and painful. And it's like I don't know what to do at this point. Maybe when my insurance renews in August I can switch to a primary doctor away from the university itself so I can get some sort of pain medication. Until then I guess this is my life.

Blech.

And now I feel fat...well, ish.

I had to measure myself for some new work clothes we are getting and seeing the change in inches from high school to now is... well, disheartening. I know that weight is not the thing to be concerned with for me, as it fluctuates a lot because of swelling. But the inches are a different story. It's also much more telling of how the steroids have added weight. I'm well-proportioned so I don't really notice normally. And now I feel lame. And fat. And ready to kick up the cardio.

Well, cardio that doesn't include gripping anything that is.

Thursday, June 9, 2011

Running Through the Rain

Sometimes you just need to run through a rainstorm.

I am a firm believer in the fact that everyone needs to have some spontaneous fun sometimes. And what could be better than running through a rainstorm?

Yesterday was my third Humira shot. I was running short on time so I couldn't tape it. Hopefully next time though. I think it is helping after all. This morning my fingers were the thinnest and longest looking I've ever seen them. It was amazing. I wish it lasted a little better though. But still, to have loose skin on my fingers is awesome :)

I'm getting excited about moving. Just two more weeks! Today, I spent my pre-work hours packing up my DVDs, CDs, and books. So now I just have my knick-knack things to go through and my clothes to finish. I gotta decide what all I'm going to use in the next two weeks. Maybe I'll just wait to do that last.

I can't wait to get everything moved over and set up in our own place. Wake me up on the 23rd so I can finish packing!

Wednesday, June 1, 2011

RA Blues... Again

I had a really hard day yesterday. I woke up with my back hurting and feeling like hell. I wish I could say that sleep gives a reprieve from pain, but often my dreams involve similar pain - probably my body responding to the physical pain I'm in. Last night, for example, I dreamed that I was a Starfleet officer fighting the Maquis when interstellar zombies attacked. Yeah, I got hurt... a lot.

But yesterday, not only was I physically in a ton of pain but I also came to the realization that, in all likelihood, this will be the only kind of life that I ever know. And that is the worst kind of pain to deal with.

I'm not usually one for feeling sorry for myself, but we all have our days I'm sure. My self-pity turned into freaking out over my upcoming move and projecting my fears onto the boyfriend. I don't feel like it's fair that he has to deal with my shitty body and how it just decides to act. But in talking about it with him, I think I feel better about it.

He said, "It's not fair to assume I don't want to 'deal with' it."

I still have a lot to learn about what it is like to be on the outside of my disease. Just like people who will never understand what it's like to be sick, many of us I think will never really get what it's like to be 'normal.' If I ever had the option, I would choose to not deal with RA. So I guess I just always have assumed that people dealing with it - that it's just to put up with X because of Y before getting annoyed/tired/frustrated and moving on to something better.

Maybe 'normal' is just a term used to marginalize everyone who doesn't have special circumstances... except that we all kind of do. So what's the point of the label?