Friday, February 25, 2011


I'm not happy about how I slept last night.

I knew it was going to be a tough night, as I'm starting to get over a sinus infection. But I didn't realize that meant that I would wake up in the wee hours of the morning with a frozen left hand :(

I don't plan on being a dinosaur anytime soon, so that better not happen again. I'm lucky that it finally went back to normal, but I was afraid to go back to sleep after that, so it wasn't super restful... which is great when I have an Arabic quiz today I feel ill prepared for because of being absent a lot because of this infection.

Yay no immune system!

Friday, February 18, 2011

MTX and Protests

Oh Wisconsin, I love your craziness.

The governor is totally being a killjoy and trying to remove the rights of unions to bargain... Also, he's going to screw up my school, and we aren't standing for it. What he's doing is removing the tuition remission for TAs, which essentially will screw up the school as a large percentage of classes (especially languages) are taught by TAs... who will now not have enough money to attend the school.

But it got me to thinking that protesting is similar to fighting a chronic disease.

As I was standing the the capitol building, shouting and protesting against this attack on our rights, it really hit me. I protest everyday, by taking my medications and by living my life as normally as I can.

We lowered my dose of MTX and I've started to take 2 pills in the morning and two in the PM. This is my first week like that, and I'm hoping it helps my side effects go down. But hey, I think it's really helping so I'm excited about that.

Well, it's either the MTX, the unseasonably wonderful weather, or the smell of protest in the air... :)

Wednesday, February 16, 2011

PFAM Time!

Well, I only got two submissions for this edition of the PFAM, but hey it's better than zero!

I love Nessie's blog, Lipstick, Perfume, And Too Many Pills. Her post, Keep Fit And Have Fun, is all about making exercise enjoyable. I'm pretty interested in investigating in her Netflix yoga find!

Carla, from Lupus and Humor (and The Singing Patient!), talks about the struggles she faced in her efforts to become 'normal.' I wish I had the tenacity to follow through like her!

We all understand how difficult it is to stay fit when dealing with pain. Along with the 'normal' excuses for not going, we get to endure crazy amounts of pain and swelling as well. I think the biggest keys to success are to only do what you feel comfortable doing, and to have a workout buddy who understands what you're going through.

I am lucky enough to experience both (on occasion). The boyfriend and I usually go together, when my schedule allows it. Really my biggest problem is to keep my exercise down to what I know I can do. Often I will try to go running instead of just walking... which would be fine if my knees, ankles, and hips weren't my worst joints. And then I end up wiped out the next day. But you live and learn. Hopefully, most of us learn more quickly than our bodies seem to want to do.

Hope you enjoyed this small edition of Patients For A Moment. Check out the PFAM blog for more dates and topics.

Monday, February 7, 2011

MTX, first weekend

I'm really trying hard to not post until the PFAM is up but it's just not working. Oh well. I need to get out some pent up feelings anyhow.

Stephen Colbert is one of my favorite people in the whole world. He's a wonderful guy, who has seen his share of tough times but still rises above and beyond. Also, he's probably the funniest and smartest person in my life that I actually haven't met :)

This is one of my favorite quotes from him - the real him, and not his Report persona:

"Don't be bitter. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life."

I'm really trying to live my life by that, and I usually do pretty good, but it's tough lately.

I didn't go to class today, and worked a whopping 40 minutes of my 8-hour shift at the hotel. This MTX (I think?) is kicking my ass. I feel like I have the flu kinda? And I don't know what to do about it. The scariest part? Not only am I having like full-on pain between my stomach and my chest, now I'm occasionally (like while walking??) getting ridiculous tingly feelings. Case in point: the boyfriend and I were at the gym yesterday, and all of the sudden my lower leg joints kind of went numb-ish... and then it felt like there was a colony of ants feasting on my legs. I stopped walking and tried to stretch out, but it just didn't help. The biting sensation was (mostly) gone, but my joints were still crap. The night basically ended in me crying, ice pack between my ankles, and my sweet boyfriend rubbing my back and working on cheering me up. He's so good at that for me. Otherwise, you know, I get this cauldron of thoughts stirring around in my head:

I hate being so weak in front of him, especially when he is so strong for me. 

I must look like an idiot, crying and talking about my body like it's another person hating me and trying to kill me. I can't even walk on a treadmill without my body freaking out on me.

Is this the MTX and will it go away? Or am I going through the first stages of MS? I don't want to go through my last years in life like my great grandma did. It's been almost eleven years since she died, and I still don't understand why I didn't ask her more about her strength and her amazing perseverance. There isn't a day that goes by that I don't miss her and think about her.

Will I be able to get my PhD? My Master's? Can I keep going to school after this semester? During this semester? Who am I kidding, thinking that I could work a full-time job if I'm not in school with all this going on?

I'm tired of being dizzy. Why do all my medications cause dizziness and stomach upset? Can we not, at our medically-advanced stage, create a friggin' medication that actually works?!?

I'm alright with waiting until my next appt on the 28th (as long as things don't get worse) to talk to the rheumy. But the boyfriend thinks I need to keep a closer eye on that... and he's probably right. He's the logical one :)  The chest pain has been happening off and on for a little while now, but I've just been saying it's got to be asthma-related and just blowing it off... which is not the smartest idea ever.

Still's Disease, you are a bitch. But I plan on not beings yours anymore, and I'm turning the tables on you one way or another.

Sunday, February 6, 2011

February 16th edition of Patients For A Moment

I'm reposting this so that it stays at the top of the page!

So I'm hosting the next edition of Patients For A Moment (PFAM). If you don't know what that is, why don't you click here and we'll tell you all about it. Anyhow, I kind of get to choose my own topic and ask everyone to write about it. If you're looking for a good example, check out the most recent post at It's No More In My Head. So, here's my prompt:

Fitness and chronic pain - what'ya gonna do?: Those of us with chronic pain conditions know all too well how bodies need exercise and activity. But what happens when you're in pain? What challenges do you face in staying fit? What ways have you found to work around problems? Or, do you have a fun/interesting/crazy/horrible fitness story?

I'll bet you do!

Soooo, if you're interested in sharing, email me the following at

  • Your name (as you want it to appear)
  • Your blog's name
  • Your post's title
  • Your post's URL

Oh hey, and try to get your post to me by the 13th, eh? I mean, as long as you get it to me before the 16th, you'll probably wind up in the post but please understand that if you send in a post at 11:59pm on the 15th, it might not end up in the carnival. The post of posts will go up on Wednesday, February 16th. Even if you're not participating, come check it out!

Oh, I almost forgot. I'm going to try to not write again until the PFAM post is up, so that this post will stay at the top of the page. But I have a doctor's appt on Monday, so that might throw things off a bit.

Happy writing!

PS: Yes, I know, my email is ridiculous/awesome/fantastic :)

Saturday, February 5, 2011

MTX, day one

So I took my MTX yesterday - after classes just in case it knocked me out.

I had a pretty good sensitivity to light not too long after taking it. And then I was about ready for bed by 8:30... which is not conducive to my hectic student lifestyle but meh. I think I'm going to ask for Fridays off from work from now on. I might even offer to work the dreaded 2nd shift on Saturdays so that I have more time to rest, but we'll see on that one.

I woke up alright this morning. I've been pretty tired all day though. And now I'm pretty warm too. I hate that.

I have a haircut appt on Thursday afternoon. I'm kind of excited. I'm not sure what I'll get yet, but I have a couple of ideas. I want something shorter, because I never have my hair down since I get so warm like that. I'm tired of my ever present ponytail-bun.

Don't forget about PFAM!

Tuesday, February 1, 2011

Okay, I tried

But I couldn't refrain from posting.

So my appt yesterday was short and sweet. I go in, tell Dr. M that I don't think the Plaquenil is really working, and say that maybe we need to play with dosages.

"No, I don't want you on any more steroids. We're gonna put you on methotrexate."

I expected it.

I was composed until I finished up with labs (only two vials - a miracle!) and got back in the car. I cried a fair amount on and off yesterday. I biked ferociously for an hour at the gym, before deciding to run away from things on a treadmill for a while.

I'm scared. I don't know what it'll do for sure. I have this vision of me with hair falling out, so weak and fatigued that I don't want to get up, but with little joint pain. What a great trade off - feeling good enough to do things and be 'normal' except for being so tired you feel like death.

At least I have my new fluffy bed to console me.