RA Superbitch

Posted on by Grayson

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.

Bobdammmit

Posted on by Grayson

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.

Running Through the Rain

Posted on by Grayson

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!

RA Blues… Again

Posted on by Grayson

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?

Out of Joint: a review

Posted on by Grayson

I finished my papers finally and, while I’m not super happy with them, I think they will do. But that left me with some free time yesterday. I know, weird right? So I picked up a book that my boyfriend checked out of the library – “Out of Joint: A Private and Public Story of Arthritis” by Mary Felstiner.

For the first time in years, I picked up a book and devoured it. Somehow I think it was because some of it was so familiar.

It’s a great book, but I found it really difficult to relate to… because much of the book centered around how things changed for Mary and how she missed her life before RA… And I don’t have that.

When I remember, I seldom remember pain – or, if I do, it is a lot less intense, I’m sure, than it actually was at the time. But that is all that I remember really. How many people have lots of memories from before kindergarten anyway?

Her book is good, and definitely worth a read – especially for our significant others. I’m really excited for when my boyfriend gets to that book, because I think it’ll help him understand me a little better – how I don’t like to talk about my arthritis, how I can still be so worried and trying to help others despite my own condition, and many of my fears.

Mmmm Humira

Posted on by Grayson

I was approved for my free Humira! Yay! I’ll get my shipment on Wednesday, so that’ll be good. I’m definitely starting to ache again today, so hopefully that will help.

I got a promotion at work which is awesome, but it requires me to work a little more especially now that one person just quit with no notice. It’s a salaried position so that’s nice too. Too bad there’s no insurance.

I have two papers to finish by the end of the month. Other than that, I’m just counting down the days until the bboyfriend and I move in together. I’m excited for many reasons, but I think it’ll help me feel better physically since he seems to have that sort of voodoo magic over me. It’s kinda awesome.

I’m ready to go back to bed, mmm. Silly work interrupting me.

My first Humira shot

Posted on by Grayson

Okay, so I’m thinking I’m just going in to get my TB test read and get the financial assistance paperwork to fill out on Thursday, right?

Well, I ended up with a free shot of Humira too.

I just would like to say that I hate injections even more than getting blood drawn. They’re far more painful physically, that’s for sure. Well, the Humira is no exception. Because it is refrigerated, I’m sure that adds to the funky stinging – but the nurse also explained that it’s a completely different pH than the human body, so the stinging pretty much is always going to happen.

My initial reaction was to pull that sh** right out of my leg, but you have to hold the pen-needle in your skin for 10 seconds. I made it, but it was tricky definitely. I’m glad that there’s only one shot every two weeks cause who knows if I could handle that for longer. But I’m willing to try anyhow. So that counts for something, right?

At least I know other people on that drug to talk to if I think something is going wrong.

Guest Blogging?

Posted on by Grayson

So, a few of us health bloggers have landed a guest gig over at the Achieve Clinical website. My first post went up yesterday. If you know my back story, it’s pretty much the same, but with some new information added and such. I like it 🙂

It’s almost been 2 weeks since my last mtx dose. And I’m dealing with some withdrawal symptoms, but I don’t feel like a zombie anymore, so I think that’s a fair trade.

I had the start of a TB test yesterday and will go in tomorrow for them to read it. I also will need to figure out if I can get my Humira free, cause I’m a poor girl. And right now my co-pay is too much to be fully covered by the co-pay card they have. So that’ll be fun. Because of all of that, I’m not sure exactly when I will start, but hopefully soon.

I just banged the crap out of my knee on the coffee table in the lobby at work. Bad decision, oh man.

THIS IS SPARTA!

Posted on by Grayson

Imagine the enthusiasm and anger with which the handsome Gerard Butler screams this phrase while kicking that other dude into that hole. Now imagine a pissed off patient in a rheumatologist’s office.

Okay, so it didn’t quite go like that.

I told him straight up I’m done taking the mtx, so I’m not taking it anymore. And I feel so much better already!

I should be starting Humira soon, but will be needing to get financial assistance with that. Walgreens called to tell me that was ready today. Eep. Waiting for my TB test Tuesday/Thursday and then I’ll learn how to shoot myself up. Yay!

Also, I’ve been offered a really unique ability to blog for another website. But I’ll have more about this later!

Tonight, I’m off to a free 80s vs 90s music battle/concert/awesome event. And, since I’m off the mtx and can drink a little more now, I plan on thoroughly enjoying myself 🙂

“Remember your hippopotamus oath!”

Posted on by Grayson

After hearing from my primary doctor FINALLY, my rheumy’s nurse tried to call me today to get me to come in sooner. I’m not going to do it.

At this point, I’m not so sure I want to even go in on the 28th.

From what my primary care dr said, it seems like all my rheumy wants to do is reevaluate my current medications and give me a referral to the pain management clinic… just like I said.

I just don’t know how to handle the appt at this point. Thoughts?